The notebook

No.  Not that romantic pap.  MY notebook.  Or notebooks.  I have several since I tend to lose them or use whatever I can find when I need to jot something down.  These books are filled with ideas, notes to self, designs, whatever.  I don’t know what to call it, but I tend to obsess over an idea until it is either (a) completed, (b) written down, or (c) horror of horrors forgotten.  The notebooks serve two purposes.  They are placeholders until I either am able to or want to see a design come to fruition.  That way I am able to give P some rest from my incessant ramblings and I am able to get some sleep.

… I’m rambling right now.

What I was getting on here to talk about today was the state of my health, both mental and physical.  My platelets and hemoglobin are both within normal limits, ergo, I am feeling somewhat human again.  As a side note, normal levels means an increase in chemo dosage.  It got bumped up to 75% today.  We’ll see what next week’s CBC brings us.  Back to feeling normal… I have energy to do more than moan on the couch and I’m bored.  This means that I’m jonesin’ to do stuff.  What it really means is that I’ve got a ton of DIY projects pinned, a half-finished quilt on my dining room table, and a notebook filling with home renovation ideas.

So far, I’m planning to change the kids’ rooms.  C has requested a Borderlands theme and D has requested Monster High.  I’m also planning to work on the rest of the house as well.  I want a complete change.  To be honest, it would be easier to move, but P and I went through all of the pros and cons over the course of a few months before finally deciding that it would be better to stay put until I finish chemo.  I’m fine with staying, but the house has to have a total revamp.  This is not just a cure for my boredom.  Everywhere I look, the sounds, the smells *particularly at this time of year* reminds me of illness and death.  It consumes me, and the closer I get to anniversary time, the worse the depression gets.  If I have to stay within these walls, I have to change them.

So now I plan.  It’s going to be a challenge, particularly since I’m under a tight budget, but I look forward to it.

I’ll be putting pictures up of the progress.

e

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.

On depression, illness, and taking things for granted

It’s amazing how much we take for granted.  From our loved ones to civil liberties, we rarely take the time to appreciate what we have and what we are able to do.  That’s one of the few things that I can thank my cancer for.  It taught me to take a breath and appreciate…well, life.

I’ve been dealing with pain and fatigue for so long that I forgot how rewarding it was to take care of myself.  Sometime Tuesday evening, shortly after my bloody steak dinner, I got this huge burst of energy and it hasn’t left me yet.  I finally started cooking again and I started organizing cabinets (insert OCD jokes here) and washing dishes and doing laundry.  I know that doesn’t seem like much, and they’re chores that I used to loathe, but for now I appreciate the simple fact that I’m able to do them.

I’ve been so depressed lately and a large part of it stems from the fact that I feel so damned useless.  I know that it’s irrational.  I’m legitimately sick and chronic pain is no joke.  I know that nobody blames me when I’m unable to keep up with dishes and laundry.  But as a SAHM, I feel as though it’s my job to keep the house tidy and such.  It’s all a slippery slope.  I feel sick and the pain gets debilitating so I take time to rest.  The house starts to fall apart because P can’t possibly keep up with it all, and I get grumpy because I hate living in a mess.  I feel guilty for not doing my part, which contributes to my grouchiness.  Cue depression.  Like I said, slippery slope.  It sucks.

Now that I have some energy, I’m playing catch-up.  I’m getting laundry done and I’m organizing some areas that have gotten way out of control.  I’ve got a few project ideas rolling around my head and I plan to get my jewelery supplies out of storage so I can get back to work.  I may even finally get around to opening that Etsy shop, which is something that I’ve talked about doing for years.

Last, but not least, I’m going to pick up the phone and call my friends.  I miss them all so much.  Unlike P, I am a social creature and I really don’t like being so secluded.  A large part of my seclusion stems from the aforementioned pain/fatigue/depression, but another part of it comes from the cancer.  I have found that it is so easy to let yourself experience a sort of disconnect from the people outside of your group of caretakers, but that is a subject all of it’s own and best left for another post.

  • Feeling better? check.
  • Feeling creative? check.
  • Reclaiming my life? double check.

Well, I guess that’s about it for now.  I’ll be talking to you all soon!

e

 

**I forgot to add that I had a great visit with the doctor today.  We finally got the test results back and I am negative  for the mutation that affects the body’s ability to metabolize drugs – so yay!  This is something that we were worried about because this mutation would increase my chances of overdosing on chemo,which would basically cause me to bleed to death.  My CBC is looking great and last week’s transfusion put me at almost normal levels for RBCs.  My platelets are finally at normal levels at well.  He has decided to keep me at half doses of chemo since I’m handling it well and he said that I am doing great right now.  I love good doctor’s visits!

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.

The dog is licking the couch…

Which has nothing to do with today’s post.  She’s just licking the couch.  She’s a strange one.   Anyway, today was our first day of school!  Instead of starting my day bright and early, I slept a good deal of it away and tried to combat the steroid grumps and the vincristine aches.  Fortunately, all should be back to normal in a day or two.  P took over studies for the first half of the day and I finished up later in the afternoon.  The kids also helped him smoke spices and make some BBQ sauce and he said that C helped him wash dishes and they all worked on learning to tie shoes.  D had her first kitchen accident this morning (she touched a hot pan) but it was minor and she still made her eggs for breakfast.  After I finally woke up and was able to form coherent sentences, I spent a while trying to figure out who we’re going to read about for C’s science lessons…and I think we’re gonna start with Tesla in celebration of The Oatmeal’s fundraiser.  I’m considering adding some Dr NGT for D’s astronomy lessons since he rocks socks, but since we’re studying the middle ages for history I want to keep with the time period for the biographies.

All in all, we had a slow start but I’m pretty happy with our first day of school.  There were minimal complaints and (other than my crabby ass) everyone was happy.  Now if I can just shake this headache everything will be peachy keen.

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