It”s been a while.

All I can say is that I’ve been fighting despair.  I don’t really know why.  All of my test results have been fabulous.  I appear to be winning my fight.  I can’t really explain why I’ve felt like everything was going to shit, I just did.  Perhaps I’m too afraid to let go of my fear.  Maybe I’m worried that if I relax, then the leukemia will come back or I’ll get a secondary cancer.  

Bah.  

I’m starting to slowly let go.  Having a clear head certainly helps.  It’s been close to three months since I got off Lortab.  Withdrawals are not something that I care to repeat, ever.  I still have three hard days every week due to the Methotrexate, but it’s manageable.  

I’m setting goals.  Goals are good, right?  Right now I’m working up the courage to go to the gym.  I’m scared I’m going to pass out in the pool or something so P said that he’d go with me until I’m comfortable going by myself.  I want to take yoga again.  I’ve been considering taking the ‘Silver Sneakers’ classes since I’ve essentially got the body of a geriatric right now.  All the same, my doctor is ecstatic that I joined a gym, but he warned me about MRSA…perhaps I should tell him that I’ve become a bit of a hypochondriac.

I started listening to music again.  I gave up playing music in the house long ago since most genres triggered C’s meltdowns.  Now I just cue up Grooveshark on my laptop and C seems to have a handle on what bothers him, but he ignores most of it.  I’m happy and he’s not screaming in pain.  Win-win.

I’m planning lots of activities this spring and summer.  We’re taking the kids to the Renfair in Atlanta because I’ve always wanted to go and I can justify it as a field trip (we’re covering the Middle Ages in lessons this year).  I also get to plan camping trips since my port got removed.  It’s a bit of a PITA since they have to dig around my pitiful veins for a good stick when I need an IV.  No matter, I’m happy to be able to swim and take a decent shower.  Having to wrap your upper body in saran wrap and hope like hell that no water seeps in sucks.

P and I are also starting to discuss plans for ‘after’.  I’m looking at one more year of chemo, but eight more years of monitoring and biopsies.  We want to move away from here, but we’ve been stuck on the where.  All we know is ‘the beach’.  We’re tied to SC until the study ends, so we’re looking at Charleston.  We considered Hilton Head, but neither of us have been there and we’re not sure if we’d fit in.  I guess it would really boil down to where P could find work.

We’re also tentatively planning a second honeymoon for when I finish with chemo.  I’m torn between going on a trip with the kids and going somewhere for just the two of us.  I’m leaning towards kid-free, but just because P and I never get time alone.  It’s a tough call because we both miss the kids terribly when they’re gone and we enjoy being with them.  Meh.  We’ve still got some time to decide.  

Well, that’s it for now.  I need to kick the dog off the laundry and get back to work.

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Chemo updates, etc.

**I’m feeling a bit lazy today.  I wasn’t in the mood to write anything original, so this is just copypasta from my CaringBridge post**

I had about a month off of chemo because my platelets just weren’t coming up like they should have been. I had gotten tested for a genetic mutation to see if my body was able to metabolize drugs properly, and the test came back clear. My doctor is now of the opinion that I just can’t have the “recommended” dosage. I got a transfusion and I’ve been at a half dose for a couple of weeks now and things have been much more tolerable. My blood counts have been great, as a matter of fact my hemoglobin was within normal limits for the first time in months! I’m sure it’s getting knocked back down with yesterday’s vincristine, but I hope that my CBC will bounce back up within the week.

I started a quilt last week. It’s a baby quilt (it said that it could double as a lap quilt, but it’s way too small) but I don’t have a baby to give it to. Wrong colors and all. It’ll get used by somebody, I’m sure. I haven’t finished it yet, but I think I’ll be able to get back to it before the weekend is out. I also picked up materials for a new project and I can’t wait to see how it turns out. I’ve got high hopes for it, but I’m a bit nervous about screwing it up. If it turns out, I’ll post pictures on the blog at the end of the month.

I’ve been having a lot of pain lately. It’s part chemo, part muscle waste. There are days when it’s manageable and everything is hunky dory but there are days when it’s unbearable and it’s all I can do to move off of the couch. There was one day this week where it got so bad I had to call P home from work. I’ve been reading about exercise helping with pain management. I’ve got a few kettlebells around the house and to be honest, I’ve got more than I need for a home exercise program, but I think that (for the meantime, at least) I need a change of scenery. I’m just not motivated in my home. Sadly, I now relate my home with sickness and pain. It’s gotten to the point where we’re talking about moving to another place. I think that we’re all uncomfortable here. But that’s another story. What I was trying to get at is that I want to exercise and I’m not motivated to do it at home. I’ve been looking at joining the Central Rec Center. P has done the math and he’s confident that we can afford the expense. I’m excited about it because it’s just a few minutes down the road and it’s got pools! I think that swimming will be great for my joint pain and I know that the kids will love getting to swim regularly. I’m hoping that they can get proficient enough to join the swim team. I’m not sure about D, but I know that C would enjoy a swim team much more than anything else. Anyway, we plan to take a tour and hopefully sign up next week. I’m excited at the idea of getting my strength back. I’ve joked about taking senior classes, but I really do think I’m going to ask if I would be allowed to join. I know that I’m not ready for anything remotely fast paced and the senior classes looked to be just right.

Well, I think that’s just about it for now. I’ve started sewing again and I really want to start making jewelry again. P and I made a pact the other day. He would sign up for school and I would create a shop to peddle my wares. We’ve both been putting those tasks off for so long, but we are running out of excuses. I mean, really. How can opening an etsy shop or signing up for online classes be scarier than, say, cancer? Or regular spinal taps? Or a life-threatening case of pneumonia?

I’m ready to move on with my life. The tough part is that my mind and my patience are more ready than my body is. I hope that joining the rec center and exercise will help that part. At the very least, it should help with the pain. I just need to keep up with the anemia. However, I’m getting weekly CBCs and I think I’ll be okay if they keep the chemo dosage where it’s at. Well, that, and lots and lots of steak.

Chemo woes

My platelets are still too low to resume daily chemo and I have to miss this month’s spinal tap.  I’m devastated, of course.  I’m still going through with this month’s dose of vincristine, so I’m going to be feeling icky later this week.  This sucks because I wanted to do something on Saturday, but I’m going to have to stay home and rest instead.

I’ve been working on a new blog.  I’ll eventually share the link to it, but I want to wait until I get a few new posts under my belt.  The other blog is going to center around food and recipes.  I’m pretty excited about it.  I decided to create a new place for a food-centric blog because I created Bethshouse as a safe haven for me to talk about my life, the universe, and everything and that doesn’t really tie with a food blog.  The good news is, you no longer have to listen to me wax poetic about what I made for dinner.  So…there ya go.

Anyway, I’m still hurting from hiking all over Hot*Lanta during Dragon*Con, even though it’s been almost two weeks.  It’s a good thing though.  I’ve got more strength than I’ve had in a long time so I’m hoping that my piddly little daily exercises will build on that.

My left ankle is still pretty swollen.  Doc looked at it today and he doesn’t think I have a blood clot or anything.  He said that there isn’t much I can do for a twisted ankle except wrap it and keep off of it.  I’m still concerned about my numb toes, but both Doc and P tell me that twisted ankles take a long, long time to heal and the numbness is from swelling.  Since I have very little experience with injuries, I’m going to have to listen to those two.

I think that’s all I’ve got for today.  I’m going to bed.  ‘Night.

Back to school…and other news

I goofed up last week, but it turned out to be a good thing.  I spent about two weeks thinking that school was starting back last Monday.  I was freaking out because I wasn’t ready.  I didn’t have all of my supplies lined up and I didn’t have a complete lesson plan.  When I looked back at the school calendar for our district (I loosely follow our school district’s calendar) I noticed that I was a week off.  What a relief!  I got my extra week to finish up the lesson plan, get to the library, and we’re heading out to pick up any last minute supplies while the sales are still hot.

I got my hickman removed this past Friday.  When they scheduled surgery, I was expecting to be put under, stitches, recovery time…the works.  Nope.  I got a mild sedation (I ended up chatting with the team the whole time) and they just yanked the catheter out.  The nurse explained that it was really just a huge IV.  It’s all good, though.  I didn’t have any trouble with bleeding (we weren’t sure if my platelets would end up being an issue) and I clotted well.  I’ve got a small bruise and knot where they pulled the hickman out, but that’s it.  I can shower today and I can submerge myself in about a week.  Yay!  As for the rest of chemo, I’m holding up rather well, so far.  I take my first dose of oral Methotrexate on Wednesday.  I’m a bit nervous because the other forms I’ve taken really mess with my stomach and apparently it’s kinda easy to overdose (which I found out causes a slow, painful, bleeding from the eyes type of death – thanks for sharing that story, Doc!).   Well, I trust my team.  The fact that she was so worried about it and she had three people check my dosage behind her is good enough for me.  I only got one month’s worth of  MTX, so I’ll be getting monitored pretty closely.

I still didn’t cook everything that I had planned last week.  I made the big dinner – the strawberry pulled pork was a bomb.  The meat itself is okay, but the sauce sucked.  P tried to doctor it, but we ended up just chucking it and using the array of bottled sauces that we had left in the fridge.  The rest of the meal was great, though.  I also made up a batch of Damn Fine Chicken for dinner last night and I served it with some sauteed mushrooms and a salad.  My mother-in-law took me and the kids out to dinner for my birthday and my mom babysat on Thursday night so we ended up just working through leftovers on the nights we were all together.  I started a batch of chicken broth yesterday so I could clear a bag of bones out of the freezer and D requested chicken soup for dinner tonight.  I guess that’s what we’ll be having.  I’m not sure what we’ll have with it.  I might make a loaf of bread to go with it.  I’ll grab a wheel of brie and the kids will probably want some PB&J.  I’m going to try to get C to try soup, but I’ve got leftover drumsticks if he doesn’t go for it.  He’s never really been a fan of wet foods so I’m not holding my breath.

Well, I think that’s it for now.  I’m still adjusting to this new schedule.  It feels so strange to have free time.  Let me rephrase that.  It feels strange to not have daily appointments.  As it stands, I’m only heading out to appointments one week a month.  That’s a huge difference between the weekly and sometimes daily visits that we’ve become so accustomed to.  It’s a bit lonely for me because P is working more and I’m home alone much more than I’m used to.  It’s a tough call.  With P working more, money is a bit less of a struggle (oh, the “thing” that P was going to do fell through.  It turned out to really not be worth it) but I really miss him.  It’s funny.  I often hear so many spouses and parents talk about how much they need breaks from their family and how they can’t wait until school starts or how they couldn’t homeschool because they need the break from their kids….I understand, at least I think I do.  They all drive me nuts some times.  But for the most part, especially now, I cherish my time with them.  I love being a part of their education and I love seeing them get interested in new subjects and making new discoveries.  I love seeing them grow.  I love spending time with my husband and I love that we enjoy our time together as a unit.  If nothing else has come of this horrible experience of getting cancer, I can say that I have gained a new sense of appreciation for my family.  I think we all have.

Phase V

I started phase five this morning.  I started off with my spinal tap and later got my vincristine.  The good news is that I’m done with that for a whole month.  I began my dose of decadron.  They halved the normal dose since I am so sensitive to steroids.  I’m back to doing my evening finger prick to monitor my blood sugar and I have to call the office if it spirals out of control again.  Fortunately, I only take the ‘roids one week out of the month.  I also started the 6MP, which is one of my oral chemo drugs.  This is the one that I will be taking every single day for the next two years.  I took it a few hours ago, I pre-medicated with an anti-emetic, and I’m still nauseous.  I may actually lose some weight this round.  I start an oral MTX next week, it is something that I will take weekly.  We’ve already run into a snafu. though.  Not only is MTX in short supply and expensive (THANK YOU PHARMACEUTICAL MONOPOLIES!) but they don’t make it in the oral dose that I need to take.  To take what is available to me, I will have to take 14 pills at a time.  We are calling the research nurse in the morning to see if there are any alternatives, but I’m not counting on it.  We’ll see.

Anyway, I’ve got a headache and I’m having hot flashes.  I’m going to *try* to go to bed after I get the pork in the crock pot for tomorrow’s dinner.

night

Waiting

Things have been pretty quiet since I returned from my stint in the hospital.  One of my dear friends got married last Saturday so P and I went to NC for the wedding.  It was at a place called the Garden Retreat and it was beautiful.  I was so thankful for the transfusions because they gave me the energy I needed to make it through.  I met a few new people.  One thing I can say is that being a cancer patient make a pretty good conversation starter.

I received my last Erwinia shot ever on Monday.  I feel kinda bad because I was testy with the AIC nurses when I should have been saying my goodbyes.  I think I will be seeing them for one more treatment though, so I will hopefully have another chance.

My biopsy was Wednesday.  I was snappy and irritable while I waited for my premeds.  I actually did snap at one assistant when she asked me if I would be willing to forgo my premeds and go ahead with the biopsy.  A little afterwards, I cried to on one of the nurses because I was so scared.  It was all for naught, though, because the ativan and morphine did bupkis.  The biopsy hurt worse than ever.  I screamed and cried like a child.  P said that everyone was worried about me but I’m embarrassed.  They ended up giving me more ativan and morphine after they were finished, so I ended up sleeping most of the day away.  I’ve been having trouble dealing with things though.  I still break out in tears when I think about it and I’m terrified of having another one done.

Now I’m just waiting on my next appointment.  I’m supposed to start two different oral chemo meds and I’m supposed to get vincristine and another spinal tap on Day One of Phase Five, whenever that may be.  I’m nervous, and as a result, I’ve got a pretty short temper.  I’m trying really hard to reign it in, but I’ve got no patience for, well I don’t know what to call it…let’s say carelessness.  I really don’t want to be around anyone right now because nobody understands what I’m going through and what I’m feeling and I know some people that take my irritation and nervousness personally instead of attempting to understand what’s going on beneath the surface.  Unfortunately, I cannot hide myself in my home.  I’ve made commitments to be around people, so I will put on my smile and pretend that everything is okay.

I’m home

I came home from the hospital after getting another two units of blood yesterday.  That makes a total of 6 units of blood and 2 units of platelets for the week.  The good news is that all of the little scrapes and bruises and petichiae on my body are finally healing and my skin is back to a normal color.

I started chemo again today and I’m tired. I’ve been trying to sleep off a headache most of the day and it seems to be finally abating. I hope to be getting back to rights soon.  Until then, I’m trying to keep cool because our AC is wonky and it’s hot out.  I have a serious love/hate relationship with southern summers right now.

Until then,

-e