Scan-a-riffic

Ended up being a no chemo day, but for good news reasons this time. My oncologist says that it looks like my latest PET scan shows shrinkage in the lung tumors, and nothing new has shown up. However, all three of my PET scans have been read by three different radiologists. And one was done in a different facility with a different machine. He wants one radiologist to look at all three scans and report on them as a whole. We will meet again after that has happened (in another week, next Thursday) to talk about the scans and his recommendation. If things have shrunk, then it's probably time for me to go ahead and set up the surgery to resect them. So... we could be on to the next step in this journey.

He decided to hold the chemo for the time being because I will need to be at my best if surgery is coming soon. Not a good idea to go in with low WBC counts, too much risk for post-op infection. I was not at all disappointed to be turned away from chemo this time. It seems like good news, and I'm more than happy to be in prep for surgery if that is the case. I can almost imagine that I can see the light at the end of this tunnel again. It feels really good to possibly be moving forward in this process. The surgery is daunting and that will be a few weeks of suck to recover from. But if it cuts out the last of the tumors, then we may be close to the end of all this.

Needless to say, I'm feeling pretty positive today. It is good to hear that the chemo has been doing its job. I was mildly concerned that I've gone through three months of crap for no good reason. But it looks like that isn't the case. I am back to the waiting game again... yet it doesn't bother me so much right now. I expect confirmation next week and I will quickly set up an appointment with my thoracic surgeon to get her opinion soon after. Hopefully she will agree and we'll get me rushed into her surgery queue. That's my optimism showing. But I'm sticking with the positive attitude tonight. Even celebrating with a couple glasses of wine. Two weeks out of chemo and off the antibiotics, I can have a drink without issue. Some normalcy. It's a good day.

Catching up

Well, that was a bit of a stretch from post to post. Been out and about getting in some good visiting most of this week. Headed over to the east side of the state to see several of my favorite people for a couple of days. I like being able to jump in the car and be on the road for a while. Other than needing a break every hour and a half or so, my butt does pretty good anymore. And I find something even more poignant than before about the open road stretching out before me. It feels good to drift along to music while the landscape passes by. There's the sense of freedom and movement of course, but also this sense of a pocket of escape, of no-thingness while alone in the car. It can sometimes feel like a buffered sacred space. And all under my simple physical control. There is focus (there must be of course), but there is a languishing as well. Ease and control in perfect balance.

I'm really feeling the traveling bug. Must be some cabin fever from the last few weeks. I want to see new things, to experience them with good people, to talk, to touch, to feel enlivened. I would really love to jump a plane and travel somewhere far away, to walk through an age-old city, to feel other and curious about all the unknown around, to cling to my companion while we muddle through and laugh at ourselves. An every other chemo week schedule makes that a little difficult to plan right now. And I never know when my stupid body will decide to have a fit and try to ruin my good time. Like yesterday. I was trying to have a lovely visit with friends and my tummy decided it was not happy and to cramp for most of the day. Bearable until later in the afternoon when it just wouldn't give up and invited my back join the ache party. Oh well. I bullied through it until home, where I popped a pain pill, turned the heated mattress pad on high and snuggled deep in bed until it all passed. Felt so very good to be warm and cozy with an entertaining trashy book in hand. A brief hibernation and I got up this morning feeling worlds better.

Soon as my schedule frees up from the every other week treatments, I am certainly going to be planning some excursions. Maybe somewhere southward this winter where it's warm and there is family. Maybe out to some city on the east or west coast. It would be pretty cool to see New York City decked out for the Christmas season. Who knows, and I don't really care as long as it is new and an adventure.

Today has mostly been a lazy Sunday. There's bean and barley soup with lamb reheating on the stove; so dinner is a no-work affair. Had lovely afternoon tea with two of my best gals. Think I'll catch up on some good TV show while I work on baby shower stuff for the evening. Not a bad end cap for a really good week.

PET scan results and more chemo on Tuesday. Keep an eye out for an update that afternoon.

Contemplations...

I've been immersing myself again in cancer stuff over the last few days. Checking out websites for organizations, finding blogs by other colo-rectal folks, as well as finding books and movies that deal with it fictionally. It's not like I don't think about it everyday, but most of the time I put it on the back burner of my mind and focus on anything else. It might sound strange, but it has been a good thing for my mind recently. Kind of a forewarned is forearmed sense. I may not have a lot of control over what my body is doing but I can mentally take some control. I've learned a couple of things and gotten a better hold on some of the lingo. It's a strange comfort. I am sitting heavily, yet comfortably, with the reality of this disease.

The hardest and weirdest part has been some of the blogs I've come across. I am the kind of gal that likes to start things from the very beginning. I like to experience stuff fully and not miss any steps/parts along the way. So I find a blog and immediately head to the first entries and move forward in time from there. Which is great until I get to a post from a family member or friend that says that they've passed away. Changes the whole perspective on what I've been reading. It sets you back into reality pretty hard, and again reminds me that I am dealing with (as I've said recently) some serious shit. There is a little sadness, but in a strange way it bolsters me in this fight. I have learned a lot about the different turns this process can take: remission, recurrence, treatment difficulties and options, etc. Also helps me to be forewarned about side effects and issues related to my current chemo, possible future chemo and other treatments. After all, a gladiator doesn't focus on the carnage around them at the end of a fight... they take away knowledge, strength, will, courage.

I've also been reminded that I feel pretty lucky in my personal journey through treatment. I have dealt with the standard side effects but nothing has taken me down too far physically. Surgery recovery was the hardest part, and even then only for the first three or four weeks. I've not had allergic reactions to any medications or chemo. I didn't have any outstanding health issues going into this. No new health issues have cropped up in the meantime. Other than my little infection debacle a couple of weeks ago, I feel like I'm getting off pretty easy.

One of the most comforting parts of my web crawling has been realizing that there are others going through the exact same thought processes and emotions that I am. It's nice not to be unique for once. And you should all understand just how keen I am to be unique. Ain't no one out there like me dammit! But in this situation it is nice to be just another member of the crowd. I am not the youngest to go through this; I am not the healthiest to get this; I am not the only one; I am part of a larger group (an army) of gladiators. And we all have to wade through the same muddy shitpile to get to the end, the other side, the accolades, the warm showers. And everyone (real and fictional) has their loving friends and family to help carry them along. Reading or watching that part is heartwarming. Because that is one very good reason why we fight. For the smiles, hugs, words and love that is out there. It is hard on this side of the coin, but I recognize that it can be equally difficult for you on the other side as well. I hope I don't forget that and get too caught up in the Victoria Show. I work hard to keep it all balanced.

So I am a little fixated at the moment. I'm sure it will pass in the coming days and I'll turn my focus to something else. Probably nephlet things as the baby shower quickly approaches. I'm planning a short trip out of town for the next couple of days to see a variety of friends; always a good thing. My pep is back and I'm going to run it ragged.

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.

Wiped

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.

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.

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.

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.