Sunday, September 30, 2012

Heart Balm

As you can likely tell from my last couple of posts, it's been a pretty down couple of weeks. My hospital vacation truly bummed me out and then chemo week physically brought me low again. I'm starting to recognize that the cumulative effects of the chemo are happening. It takes me a little longer to bounce back now, the fatigue lasts a day or so longer, and appetite and belly issues are more common. Depending on what my PET scan this week shows, it could be another 3 months of chemo still to come. So I'm just going to suck it up and deal.

Went to an SCA event yesterday and saw many friends. It was a well needed trip out of town and a balm to my heart and soul to spend good time with so many good people. The sun was shining, it was a warm and beautiful day to be out. In case I haven't made it clear yet, all of you that are cheering me on and loving me through this are instrumental in this fight. I can do pretty well keeping my attitude positive, that's always been my way. But the enthusiasm I get from planning activities with my friends and family, the simple joy of talking/texting with you, the smiles you bring with your pokes and avalanches and attention, these are the little daily things that help keep me looking forward. Life is experience and people. And as I know I have said before, my people are awesome.

Awoke this morning to a good friend asking us to breakfast. What a great way to start the day: food and conversation and hugs. Then home for a lazy afternoon and rest. My youngest kitty has been hanging close and purring at me all afternoon as well. It's been another lovely day. Dinner is on the stove, simple comforting pasta e fagoli with baked apples and vanilla gelato later. Think I'll catch up on a good tv series and plan some trips to visit friends this week. It's off-chemo week, and now that my attitude has swung back up I'm already feeling restless to get out of the house and see more folks. Heck, if I'm feeling this good tomorrow morning there may be a lot of chores that get accomplished. It's nice to feel good again.

Thursday, September 27, 2012


I am so freakin' tired. The chemo is just wiping me out right now. It is probably because of my little setback last week. I was already in recovery mode before we even started this treatment. I run one errand and I'm ready for a nap. Run another, and another nap. Had three doctor appointments today and it was just at the edge of what I was able to handle. Also finally got the invitations for my sister's baby shower in the mail. Those are a week behind but still out with enough time for RSVPs, so I'm not sweating them being late.

My energy and enthusiasm have been rather lacking for the last week's time. I know that hospital visits like I had are probably pretty normal in the scheme of things, but it bummed me out. It was a kick in the pants to remind me that we are dealing with some serious shit here. For all the good/normal days and the good times that I'm determined to keep finding, the underlying dark fact remains for now. And I still find it hard sometimes to just sit in peace with the harsh reality of my illness. Stage four is a scary thing and my body is doing a lot more work with recovery and fighting than I give it credit for. It's easier to recognize on days like this when I am so wiped out.

Tomorrow will be nine months since my diagnosis. That's a long time to be dealing with anything. I have complete sympathy for my sister and how hard nine months of pregnancy must be. Especially with your body changing so quickly and so much. I know that I hit the wall last night and was as mentally and emotionally tired as I was physically. It was a moment of "I'm done." It has been so much for so long now and it isn't always easy. I'm still hopeful and still full on in this fight, but I'm in a bit of a valley right now. I am looking forward to an event this weekend and seeing many friends. I am expecting to have a fantastic time and will be drawing lots of energy from the people and activities around me. I hope it is just the thing to help me start making my way out of these doldrums.

Tuesday, September 25, 2012

We're Live Live Live

Despite my infection debacle, my blood counts are looking really good this morning. My neutrophil counts are almost at the normal range even. So, since I'm still taking the antibiotics and everything continues to drain well and I don't have any pain... it's a go for chemo.

12:15 p.m.
Soon as I saw my oncologist and he approved the chemo orders, they were quick as bunnies to get me into the infusion room, accessed and started in on the anti-nausea drugs. I had my morning chauffeur take a detour to Water Street for breakfast and lunch items, and a lovely steamed milk. Just now getting to my black bean breakfast burrito, spicy and tasty. My energy level is really high today, so I hope the atavin doesn't mellow me out too much this round. I'm sure that by the end of the day all my pep will have pooped, but it's nice having it with me for now.

12:25 p.m.
First anti-nausea med is done. Second being loaded in now. I remember laughing at my first treatment about how it seemed like overkill to pump me full of four different anti-nausea meds. It seemed unbelievable that it could really be that bad. But then I went home that first time and threw up anyway. I really need to stop chalking all the "Danger, danger Will Robinson" talk up to drama and remember that we're dealing with some serious shit here. It is easier to laugh it off, or spin to the positive than to sit down in the infusion room, look around and see the crap that so many different people are dealing with on their personal cancer journey. Some look pretty well, like me. Others are pretty wiped out and have clearly been struggling. It's humbling and real and hard.

1:20 p.m.
Enjoying some lovely lemon poppyseed cake from Water Street along with some hot cocoa. My pump was beeping, declaring done with the last anti-nausea, so it's time to start the actual chemo drugs now. The long two hour stretch begins. Going to catch up on FB and have a bathroom break.

1:49 p.m.
Nurse just came by with the paperwork for my latest PET scan scheduled for next week. This will tell us how the chemo is affecting the lung tumors. If it's eliminating them, then we just continue on the chemo regimen until things are stable enough for resection of the lymph nodes and/or any remaining tumors. Still a long haul of this ahead of us. But at least we'll have some answers about how the process is going in another couple of weeks.

3:25 p.m.
That was an unexpected and good nap. And now we're basically done. One last shot of chemo and pump hook-up. Gotta let my ride know and close out this edition of live chemo blogging. Stay classy friends.

Sunday, September 23, 2012

Jiggity Jig

Home again, home again, jiggity jig! They finally released me midday today. Packed all my stuff up quick as could be, changed in to some real clothes and got the heck outta there. Headed straight home where I was greeted by what I will delude myself into believing were grateful kitties. Was craving some pasta. So after a quick unpacking, headed back out into civilization and rustled up some really good lasagna. It was pretty freakin' terrific to be out and about and not stuck in the hospital anymore. Don't get me wrong, all my nurses and their assistants were great to me, the rooms are decent and I had people and stuff to keep me occupied. But it's just not the best vacation you can plan.

It's been a good afternoon and evening so far. Though I am getting tired pretty quickly. There's not a lot of opportunity for uninterrupted bouts of sleep in the hospital. And I'm so looking forward to crawling in to my own bed, with fresh flannel sheets, and sleeping without an alarm or someone to wake me up in the middle of the night to take my blood pressure or my blood. Speaking of blood... my WBC counts have incrementally gone up each day I was in the joint. Still not very high at all, but staying on the upswing is positive. They are continuing the antibiotic regimen with two oral pills for the next 10 days. My energy level is back up to the new normal and I am generally feeling fine. Have been for the last 36 hours actually.

This Tuesday is a planned chemo day, but I'm not sure how that is going to work out considering my last week's experience. I'll see what my oncologist has to say, and will also be checking in about when we are planning my next PET scan (should be soon I suspect) to see how the cancer is reacting to the chemo these last couple of months. I'll also see my rectal surgeon again on Thursday to double check on how my ass is healing after this most recent debacle. Expect to see a new post on Tuesday, whether it is more live chemo blogging or an explanation of why we're not getting it this time around.

I'm just very grateful to be back in my own space again. It was hard to get excited about much this week. I really struggled with feeling confined and down. I didn't get up and take walks or anything. I just wallowed in my room and took comfort in the people around me. It was very, very nice to have my sister in town for part of it. We had some great conversations, and she is such a relieving and loving presence for me. Again, I am amazed at my support network, at all of you who are helping in so many ways and reading and cheering me on through this. I had special deliveries of tea, chocolates, bagels, lunch, dinner, coffee, movies. I feel very lucky and extraordinarily thankful. So, thank you. And know that I hold so much love in my heart for you all.

Saturday, September 22, 2012

Safety First

Still here in the hosptial, waiting it out. Infection is clearing up rather nicely. All the inflamed ugly redness has resolved into a healthier pink and not inflamed. No more blood or stinkiness, and still draining nicely. My surgeon is happy with how everything looks and is going. The med docs seem happy with how everything is going. I've been getting IV antibiotics fresh every six hours for two days running now and it seems to be agreeing with me. They're transitioning me from one IV antibiotic to one oral and one IV (which can be prescribed as an oral). They're keeping me overnight for observation and to make sure I don't have any issues with the new meds. If everything looks good, I continue to have no fever and my WBC counts don't fall any lower with tomorrow morning's blood work, they will likely let me go sometime tomorrow afternoon. So almost done.

In this blog post we learn about blood science (yaaaaayyyyy!!!). Today's post is brought to you by the letter N. When you get a basic CBC blood work up you get your RBC, WBC, hemoglobin and a whole slew of other chemistry names that tell you nothing about what it really is. One of those words is Neutrophil. This is your mature white blood cells. Your WBC count tells you how many recruits you have on the ground, but the neutrophil count tells you how many seasoned vets in tanks are there with them. These are the guys that strategize and really know how to take out the enemy (evil cancer - ooooohhhhh). So your WBC count could be pretty decent, but if your neutrophil count is low then you are still in pretty crap shape. If they're both low (like me), then you are in crap shape no doubt about it. This state is called Neutropenia and calls for neutropenic precautions. So there's a note above my name that says this and is accompanied by a box of face masks. Anyone who comes in who may be sick, could have been exposed to something, or is generally paranoid about that sort of thing can don a mask before coming in. This is for my safety, not yours. I don't have anything to give you, but I am a ripe candidate for all bacteria. I've got five whole pages of other precautions, but you seriously don't want to know about that paranoid paraphernalia.

It's certainly interesting seeing most of the people in my room with pale yellow masks on. And the way they move when people talk is weird and birdlike. I get kind of fascinated watching their masks and getting caught between Bane and Big Bird imagery in my head. It's not an absolute that you have to don a mask when you come in, but all of the day staff are following the guideline. And since we take things like this seriously in our household, it's safety first even for the safest of visitors. (*snerk*)

Good visiting tonight when my sister showed up in town. We had a little pizza party here in the room and a good time. I kicked everybody out a bit ago so I could get to the midnight poking and prodding and meds, finish this post out and get some sleep myself. A bit of an insomnia bout last night so I'm pretty wiped out tonight. Since I'm mobile and doing really well, I am low on the priority list for the shift nurses. Which equals a good thing because they don't come in so often to check on me and unless they need to take vitals or make a change to my IV, they'll just leave if they see that I'm sleeping. So there are good 3-4 hour shifts of sleeping that can be accomplished. A very nice perk indeed. Hopefully by this time tomorrow I'll be happily ensconced in my own bed with unlimited sleeping shifts available. For tonight, again, I'll have to be satisfied with just my pillow. Oh, and I miss my kitties.

Wednesday, September 19, 2012

Two steps back

Well, back in the hospital again folks. Apparently I have a massive infection in my ass and it just showed its worst symptoms today. I knew I was feeling a little 'off' the last two days, but wasn't sure why. I chalked it up to just having a couple of off days and didn't put too much stock in it. But finding a massive amount of bloody discharge this morning told us something was definitely wrong. Called my surgeon's office and they had me come in to the ER to start the procedure of bloodwork and scans. On the plus side, my WBC count is pretty high for me right now. Still low of course in the normal course of things. Won't get any word on the bacteria cultures until late tomorrow. And my docs will come by tomorrow to talk about the results from the CT scan.

They admitted me in to the hospital for at least a day, possibly more. But that info will become more clear as results roll in tomorrow. They have me on IV antibiotics for now, and it has helped me feel better already. Hopefully we can clear this up ASAP. Unfortunately this probably means no chemo next week as planned. They'll likely want to make sure this is completely cleared up before treating me again. Oh well.

Tired, pain drugs are kicking in. Going to try to get what sleep they allow you in the hospital.

Sunday, September 16, 2012

The Cancer Fashion Guidebook

A girlfriend of mine hosted a middle eastern themed afternoon party yesterday. We all gathered outside under a tent, ate middle eastern nibbles, listened to some live sitar music and drumming, drank tea and wine, and generally lounged about on many piles of cushions. Everyone was dressed in saris, salwar kameez or middle eastern tunics. It was a extraordinarily lovely party. And I always love an excuse to dress to a theme, any theme. It's not so much that I'm just into costumes; I like the challenge of playing with fashion and dressing outside the ordinary. The outside the ordinary is really the significant part.

I finally settled into my personal fashion sense a few years ago. I don't know how to describe it, but the lines are very classic mid-20th century, everything is just so, and I like to throw a twist in there through patterns or accessories. Most of the comments I get are that I always look so "put together." And I haven't deviated from my fashion sense this year. As a matter of fact I now actually work that much harder at it when I'm going out and about, especially for doctor's appointments or chemo. One of my best friends (and summer chauffeur) told me that she thought it was really terrific that I didn't give up on style when it would have been so easy to do so. I could show up for chemo in yoga pants and a hoodie, or versions of pajamas. But instead I look put together and fashionable and/or professional. The thing is, there is so much about having cancer that challenges the way you look at yourself. Or actually changes the way you look. Keeping up outside appearances helps me feel somewhat (or a lot) better. And I already spend enough time at home lounging in pjs.

I remember walking, or rather shuffling, through the hospital maybe five weeks post surgery for an appointment. I couldn't walk so well yet and it likely would have been obvious to anyone watching that I was the one there for some reason. But I was in a cute summer dress and trying my best to just walk slowly and not bent over or too shuffle-y. I looked at my husband and said that even though it might be clear, I didn't want to look like a sick person. And that is the key right there. I refuse, in any way, to give in to this situation. And though keeping a sense of style might not seem like a defiant act, for me it certainly is. I relish the look of surprise on strangers' faces when they realize I'm the one with the appointment, that I'm not waiting for a patient. Some of the nurses at the cancer center have taken to calling me 'super model' because I'm always dressed up well for chemo days.

There is not a lot that I can control in this fight. Weeks and months can go by before I get answers to questions, or know the state of my disease and how it's reacting to treatment. I can rest, I can take care of the rest of my body, and I can try to keep myself mentally stable and emotionally content. But really, I just show up when I'm supposed to and go through what my medical team has decided is best. It is challenging and frustrating, and finding stability in the center of it all can be hard. But I have a goal, to again be a normal, healthy person. That's a theme to which I can dress. So here is me, a rebel in peep-toes.

Wednesday, September 12, 2012

Aunt hill

I attempted to be productive today. Only found mild success. Working on projects for my sister and the coming nephlet. (I blatantly use my major in English as an excuse to create words.) I'm pretty excited about the whole prospect of being a kooky aunt and am having fun being involved with the process. Baby shower invitations are 90% ready to print. The material for my first sewing project is washed, dried and ready to be cut tomorrow. I've been practicing my crochet again for many cute little upcoming projects and items. I also got dinner cooked and the kitchen cleaned. Though I wasn't expecting to be that on top of the latter this early in the evening.

My plan for this part of the evening was to see a local band playing free at a pub in town. But when I got to the pub... no band and mostly empty. A bit annoying since I was looking forward to it all day. My positive attitude has really permeated however. I double checked to make sure that it was the pub and band that were wrong and I didn't have the wrong week (I didn't, the liars!). Then ran an errand and picked up ice cream and champagne to indulge myself as a consolation. How do you stay down with that kind of treat? Put on some peppy music and accomplished the dishes and kitchen as soon as I got home (after half a glass of champagne of course). Now I'm rather pleased and also accomplishing this blog entry. Go me.

A year or more ago the evening wouldn't be going nearly so well. After looking forward to going out all day I would have been sorely disappointed that the band was not there. I would likely have harumphed and allowed myself to sit in disappointment for the rest of the evening. Upon coming home, I would have seen cleaning up as a huge chore. And if I did seek indulgence, I would have weighed guilt on myself about it. What a chit I was back then! I have become so much more laid back. A real 'shit happens' kind of gal who rolls with the punches. I think I like me better this way. Part of what has helped with this mental transition has been allowing myself to let go of control. Or to be more honest, to let go of a false sense of control. I can plan for things, can even allow myself the indulgence of imagining how they'll play out. But I have no control over how places, people and outside events actually happen. The best thing I can do is be there, in the moment, and make the best of the situation. Or make a new, better situation. There have been some awfully good lessons learned this year. Who knew that cancer could beat you down and yet build you up at the same time.

Sunday, September 9, 2012

Sunday Respite

Ah, Sunday afternoons. They always feel better if you've had a productive Sunday morning. Still have errands to run, but taking a tea break and chilling with Roy Orbison. It has been a pretty good couple of days even though the last few were on the chemo pump. Since the cancer center is closed on the weekends, I had to go to the hospital to get my pump taken off yesterday. A bit more waiting than at the center, but all in all the same process. Felt pretty wiped out Thursday and Friday. Napped through most of Friday actually. And after sleeping in and another nap on Saturday, my energy was pretty good yesterday afternoon and evening. Keeping up on the sleep really helps in the first few days after chemo. I had originally planned to attend a dance party last night, but wasn't sure if just coming off the chemo was going to agree with that plan. Turns out all that rest worked for me. I was able to dance a good part of the night away. Though I can really tell that I am out of shape and don't have the endurance I'd like. All that jumping and flailing around for a couple of songs and I would need a break. And I was totally wiped when I got home. But it was great to be able to dance it out again.

I've learned to see naps and rest in a more positive light. I have in the past been one of those folks who says that "sleep is for the weak," or "you can sleep when you're dead." There is far too much to explore every day, so many things to get done, work, projects to finish and start, and somehow still find the time for the balance of relaxation and fun. There just never seems to be enough hours in the day. I would often sacrifice sleep for many things, some important and some just not. A year ago I had picked up a book by a British writer called "How to be Idle." It was a lesson I felt that I needed to work on. Of course finding the time to read the book, much less take the time for idleness was futile at the time. I've always been excellent at just losing time to what seems like nothing: staring out a window, intently focusing on a run of songs, sitting in your head not even thinking. And I've been very good at imposing an inordinate sense of busyness and overt responsibility on myself. Many months ago I would have held the latter above the former for a good use of time and energy. But now I've come around to thinking the opposite.

I wonder about all the 'busy' that we put on ourselves. The busyness can help us feel important or worthwhile, especially when we are feeling unsure of ourselves. It can also be the sense of responsibilities that are not ours to bear (an issue I've been working at for quite a while). Sometimes, it is enough just to get through the day. Taking care of, and paying careful attention to, only the basics can be revelatory. Deep satisfaction can be found without ticking off a massive to-do list. And sometimes staring idly out a window can be the reboot that our brain needs. So I've become rather the good idler nowadays. And somehow I still get things done. And the days that I don't get much done, those are okay too. Right now, it's time for cup of tea number two; a fine moment of respite.

Thursday, September 6, 2012

More Live Blogging!

My bloodwork counts are way up this week. Still below the average zone, but the important numbers are double and triple what they were last week. And apparently my bilirubin numbers are in a much better place as well, which means my liver is in better shape. The extra eight days off chemo this last week gave my body some needed recovery time. My immune system is still pretty compromised, so I'll have to continue keeping a watchful eye on myself. But it is fantastic to know that my body can bounce back on its own so well.

9:40 a.m.
So right now I'm accessed, hooked up to the first IV fluids, got my pillows and a warm blanket, and I chose a chair with good sun exposure. My belly is full of a good, warm breakfast and they just brought me some fresh coffee. Not too bad of a start for chemo day. Going to go play all the scrabble games now. Keep refreshing for the ongoing live updates!

9:55 a.m.
The drugs begin... A shot of two anti-nausea meds, and start up the Ativin. Herewith starts the mellowness. I'm hoping the muscle relaxant properties help to loosen my right shoulder up. Woke yesterday with it all tight and sore up into my neck. Heating pad time and ibuprofen didn't help it any yesterday. If they get done with me early enough today then I'll head upstairs for a free chair massage to try to finish working the kink out.

10:15 a.m.
The Ativin has definitely started kicking in. Feeling a bit unfocused and losing the typing skills. Started the third anti-nausea med, this one stays in my system for three days. And yes, the overloading of the anti-nausea drugs are needed. It seems a bit crazy overdoing it, but it's important.

10:45 a.m.
Moving on to the Avastin, an angiogenesis inhibitor which helps the body prevent the creation of new blood vessels. Cancer cells grow and spread by forcing the body to create new blood vessels to feed them. This acts as a counter. And sleepiness is winning. Might be time for nap number one.

11:18 a.m
No nap yet. Getting hooked up to the Oxaliplatin now. Will have to move to warm drinks from here on out today. This is a two hour infusion, so good time for napping.

12:24 p.m.
Napping accomplished. Could do some more, but not feeling completely at its mercy now. There will be more napping when I get home. Also feeling less fuzzy from the Ativin. I bought myself a sandwich to go at my breakfast restaurant this morning. I should be hungry by now and should attempt to eat at least some of it. Unfortunately I can already feel the effect of the drugs on my system and hunger is dissipating. Talking with a couple of the ladies here about nutrition through this process.

1:27 p.m.
The long hang is done and now flushing me to prepare for the pump. Apparently we can't get a blood return from my port access, which means that a blood clot or protein skin has formed at then end of my catheter. So I get a dose of TPA to break it up. We wait for a while for it to work and then try again. Time to catch up on scrabble games.

2:10 p.m.
Blockage is clear, waiting for the pump now. Then, I think I'll scoot upstairs and get one of the free chair massages they offer after this. My shoulder is a little less tight (probably the Ativin), but still tender and sore up to my neck. And I am so very tired and don't have much focus. Tried to play a scrabble game and just kept micro-napping. Getting the bolus of the first 5-FU now. Another ten minutes or so and I'll be free.

2:30 p.m.
All hooked up and ready to go get my massage. Then home where I will attempt to get around to eating my lunch. And naps, there will be much napping. I hope you've all enjoyed this 'oh so exciting' (note the ripe sarcasm) edition of live chemo blogging. I'm outie!

Monday, September 3, 2012

Here Comes the Sun

I am slowly conquering the car. This weekend I have survived a three hour car ride with only mild discomfort, and made a two hour drive myself. The drive was a bit more twinge-inducing. I could have used a longer break once every hour. But I feel a level of freedom opening up in this ability to get further from my house without a lot of accompanying pain and annoyance. Saw my surgeon late last week and he corroborated that my ass is healing rather nicely. I won't see him again for another month. And I hope by then that the incision is even closer to a hundred percent healed.

It's already September, and I am having a difficult time getting my head around that. Even though a lot has happened this year, it doesn't feel like I've been through an entire eight months. I'm sure a large part of that is that I've missed many of the events and activities that typically mark off the year's passing. But I believe another part is my lack of doing much of anything these past couple of months. Time passes strangely when the atmosphere and timbre of your days stay much the same. I've also lost the rhythm of weekdays to weekends. The passing of time seems to be something outside of myself, that other people do, but not so much me anymore. My sense of time is much more fluid. It is all around and stretches out in front of me like the horizon, visually tangible but never attainable. But I heard a flock of geese beginning their fall migration one morning this week. Fall recipes involving pumpkin and apples are beginning to appear. The walnuts and first leaves are falling from the trees in my yard. The days are still long though, and delightfully warm. There is still time before the cold starts to take hold and the color begins to drain from the outdoors.

It has been a blessing to go through some of the hardest recovery (so far) in the spring and summer months. The dark, colorless cold of the winter can sometimes be long tiring months for me. I imagine my cheery mood is often helped by the sunbeams streaming through my windows. The permeating warmth of summer afternoons that induce soft, easy naps. Even in the first weeks of surgery recovery, I could briefly escape to my porch and pretend I wasn't trapped, housebound, by my body. As much as I love the night and worship the moon, I am very much a sun child. So I guess I could tell you that it has been a pretty good summer for me. Although it definitely won't rank in the top ten (or twenty, or thirty...). I'm still up, around, and kicking. And I'm definitely feeling sunshine-y.