Day 10, An Upswing

Today was the first morning of this cycle that I felt a noticeable change in the bone pain. I am still achy, but it feels more like I did too much yard work yesterday vs. the walking on eggshells full-body bruise that I've had since the weekend. I did laundry, I made gazpacho, I cleaned up my mess.... if I had a Twitter account I'd probably say something like #feelinglessworthless. On top of that I'm meeting a friend for lunch and am excited to see her sweet face and get out of the house.

Day 6, Weathering New Chemo Patterns

As nice as it was that the steroid made the post Neulasta joint pain more tolerable, I am now weathering extended joint pain most likely from the chemo T itself. It's nice to be spared the nausea of the AC, but the past couple days of extended joint pain has reminded be that the last 8 weeks of this shit will be no smooth sailing, just different issues and different hard days. Yesterday I was extremely exhausted, probably for lack of sleep the days prior due to all the steroids, I have a very sour stomach which is probably a combination of the chemo and the steroid, and I still have head to toe joint pain which even throbs when I lay on the couch and read or watch TV. Again, I just want to be done with this all and have my un-chemically altered body back.

Day 3, Steroid is Helping

The new steroid is helping with my joint pain. I still have joint pain, but at a tolerable level. Normally on day 3 I wake up, cry over my cereal, and head back to bed for 36 hrs with pain, grogginess, and nausea. I don't think my back is up for a walk today, but I am okay in a seated position so I will be able to pass the time with family, books, and TV which will help my emotional state vs. being alone and horizontal in a dark room for 36 hrs. Plus, being upright will help me be able to eat, drink and stay hydrated better which is so important right now. And it didn't hurt to take a shower today! I'm sure the drawback to being on the steroid for a few days will be fatigue coming off of it as there were multiple times last night that I was wide awake for an hour or so, but for now I'm grateful for the pain reduction. I've never fully understood the addiction to narcotics, to me the nasty side effects are worse and linger longer than any pain relief provided. But now I understand why NFL players like their roids so much.

Day 2

So far T is treating me better than the AC. My sleep was interrupted last night (probably the steroids) but I did not get the raging headache, bed sweats, or swollen eyelids like the last 4 times. I had my evil shot this a.m. to boost white blood counts and have started to feel the aches by late afternoon. Tomorrow will likely be the bad day again, with the joint pain from the shot. We picked up the new prescription as another effort to battle the pain. I mis-spoke when I said it was a non-narcotic pain reliever (we already tapped those out). The new prescription is a steroid so we shall see. Both the Dr. and the pharmacist who filled the prescription told me that I could be very moody while on the medication (2 days on, then 2 days tappering off), so keep me in your prayers that it helps the pain and give your sympathy to Ryan and Pam who will take the brunt of my "moodiness".
 

Chemo #5, Day 1, Home Now

Chemo #5 is done. I had a nice homemade pizza dinner and at this very moment am actually feeling less queasy and tired than I did when I went in this a.m. The new chemo drug is supposed to have less nausea effect, so my current state is probably a function of the IV steroid that is still given to prevent nausea. Right now I'm just kind of puttering around wondering what the hell is going to happen next? Common side effects of the new drug include joint pain (more joint pain, on top of the evil shot joint pain?!) and neuropathy. If I get joint pain it will be sooner than later, but the neuropathy is typically something that gradually sets in. Last time the joint pain from the shot was very bad, so bad. Despite being adamant not to take any pain narcotics for personal reasons, I've caved a bit and this time around I'm going to try a prescription non-narcotic for a few days and experiment with more clashing side effects. The claritin, ibuprofen, tylenol, and acupuncture just aren't cutting it.

Speaking of drugs. If you want to fall asleep fast I suggest you get a syringe and inject benadryl into you jugular vein. [kidding of course...] Within seconds I was INSANELY sleepy today and slurring my language like I'd just drank a bottle of wine. Holy moly! I managed to stay awake just long enough to scarf down my Bento salad.

Off to watch Homeland....

Chemo #5, Day 1

My red and white blood counts continue to drop, but I am still good to go for the heavy drugs. Quick post from the chemo chair as the sedation period is going to start soon. Today is a new drug and my IV cocktail includes benadryl so I will soon be very sleepy. Benadryl because today's chemo drug includes a risk of allergic reaction which is also why it is administered very slowly. Today's visit will be 3 hours longer than the last drug. Going to be a long day. We got here at 9 and everything is behind schedule because today is the hospital's long-awaited conversion to electronic records. Everyone I've spoken with has complained about it. Poor babies. I have started to remind everyone who bitches and moans about the new system that they could be injected with poison today. Probably not going to get out of here until 3:30 or 4.

Also, today I remembered my fucking lidocaine cream.

UPDATE: OMG! OMG! OMG! My head is boggy and I feel drowsy and she hadn't even finished injecting the benedryl. 

Talking About Cancer and Not Talking About Chemo

My initial emotional dump on the blog was helpful, but I'm finding that keeping up with regular posts is going to be difficult. On the bad days I am too physically drained to even think about it. Plus there is so much of the same....insane joint pain, drowsiness, and nausea on the bad days, and lingering fatigue and nausea on the good days. I start to come out of the cloud a bit on day 8 and am able to go for walks, eat tasty food, and go for post dinner bike rides around the block with the kids. There is a definite pattern and the only thing that seems to change is that the fatigue lingers a little longer each time, probably because my red blood cell counts continue to get a little lower each time.

On the good days I want to put treatment as far out of my head as possible and don't want to talk or blog about anything chemo related. I don't like to see the word 'chemotherapy' on a book or hospital paper, I can't drive past the hospital, I don't want people to ask me where I am on the chemo path (i.e., 4 down, 4 to go), I don't want people to speculate that the second drug might be better because that is still yet to be determined, or the nausea starts to build up from anxiety. I just want to talk about what is going on in the lives of others because it is so much more interesting and controllable. What I am dealing with is totally uncontrollable so why bother talking about it when there's nothing you can do about it.

I have made some progress in the last few days talking about cancer with Reese though. Throughout this process I've been afraid to even use the word 'cancer' with her out of fear that she'd use it and someone will say to her, "I know someone who died of cancer." The social worker (& others) have recommended that I be more upfront with my kids about the topic. I was loaned several children's books and have started reading a couple to her which she seems to enjoy. When I read something that we've been through she eagerly says, "just like us." She isn't emotional while listening though I have to work to not get choked up from time to time. It will be good for her to understand that the treatment isn't going to go on forever and that eventually I'll be on the path to normal again. Plus, as much as she'd like it, it's good for her to comprehend that Grammy isn't going to live with us forever, LOL!

Day 6

Ugh...still so tired but will post an update while I'm awake trying to hydrate. The blog had been helpful to communicate, but I will say that the chances of me posting an update 3-4 days out of chemo will be slim, most likely none. I was in bed for over 36 hours with severe joint pain, among other things. I couldn't even motivate to turn on my audio book. I'm too out of it to write, nor do I have the stomach to sit there and catalog all the things that are wrong with me. I had a few short bursts of tears over those few days mostly due to the physical pain and frustration that nothing makes it better. The last couple days I had a couple tears that were more emotional, I think because I get past the really bad physical pain and then I'm really worn down, tired, and tired of being so nauseous.

Today I actually cried thinking about how I missed work (currently on short-term disability). Just another form of the "I want my life back" phase. Not that I'm the type of person who is overly excited to go to work, but I miss it. My job isn't one of those jobs where I come home feeling like I made life-changing accomplishments, but I miss feeling productive. I'm so NOT productive right now. The closest that I get to using my brain is every other week when I get my head back I sort through the mail and bills and evaluate our financial state of affairs. Mostly I miss the people that I work with. An engineering job may not sound very exotic, but the people that I work with are amazing, sincere, smart and many of them wickedly funny. I miss being a part of a group, I miss regular lunches with a dear friend, I miss the inappropriate e-mails!

Along the same lines of feeling so utterly useless, I seriously don't know what we would be doing without the help of my mother-in-law, Pam, right now. She is here to help and has stepping in as the second responsible adult better than we could have imagined. She's up at the crack of dawn helping Ryan with breakfast, deflecting tantrums, making lunches, taking kids to school, grocery shopping, cooking, cleaning...on and on. I still feel like the kids are handling this well for their age, and I'm sure it has a lot to do with the extra family care. Having happy kids helps a ton with my emotional state as well. Any parent will tell you how quickly it can make you sad, or your blood boil, at the sound of your kids struggling. I'm so thankful that I don't have one more layer of stress on my body and mind. Thank you, Grammy.

Day 4

Will try to post tomorrow...I'm still so tired. Yesterday was a lot of physical pain, I'm slowly digging out of this...

Day 2

I'm tired, very tired. Got home yesterday and almost immediately went to bed because I was tired and nauseous. Before chemo they give you a couple IV steroids designed to ward off nausea because the last thing they want is for you is to vomit (which I have not yet). The nausea that I have is best described as spending too much time on a roller-coaster, all day long. Laying down seems to help so Lilly and I began our audio books which was nice to pass time.

Another example of just how intuitive pets are....normally at night-time Lilly sleeps at the foot of our bed. However, last night from the get go she cuddled up and spooned with me all night long. My first night of sleep is very interrupted from the drugs, but every 1.5-2 hours when I would wake up I was greeted by a purring cat.

Nurse Lilly

Today I got a slow start, had breakfast and visited with Pam, got on the internet for awhile, made it to my appointment for the evil shot, got home and ate lunch and have been in bed trying to sleep since. No luck, so I'm writing an update and then will be back to the audio book. If like the last 3 rounds, the joint pain will start in my cheek and jawbones this evening and will have spread to my shoulders, arms, and back by tomorrow a.m. Interesting thing is that I don't get the joint pain in my legs. Such a shame to waste the power of my large bones and have the bone marrow in my puny cheek and arm bones work overtime. The next 2 days will be the tough ones.

I received a few very thoughtful care packages in the last couple days, wonderful dinners, and many well-wishes. Thank you from the bottom of my heart.

Chemo #4, Day 1

Writing from the hospital on my last 30 minutes of chemo #4. The whole process of the blood draw, meeting with the Dr., and the infusion takes about 4 hours. When we got here I realized that I forgot to apply my special numbing cream for my port and blurted out, "shit, I forgot my fucking lidocaine!" which the waiting room took in stride. The nurse iced it and was successful with her first stick, fortunately.

A week ago I had called my Dr. wanting to talk about not going forward with the last round of AC. His nurse called and said he wouldn't talk to me over the phone, but that we would talk about it during my next appointment. We talked today and he was willing to skip the last AC if I elected and move on to the T. I inquired if there was any data for cutting things short, to which there is not, and he just offered that the textbook recommendation is to complete the treatment, of course. I decided to go ahead with it. I don't want to ever think, "what if I had just finished...." After treatment I will have to learn how to live without fear of recurrence, but whatever happens after this at least I'll know it wasn't for me not trying. 

I feel really tired today and I haven't even left yet. My body is beat down and it probably doesn't help that the waterworks started yesterday. As soon as the nurse put on the cape and gloves my heart started to race. Today was the first day that I cried while the nurse injected the A. Normally the oncology nurses annoy me because they treat you like it's no big deal, like you're here to get a flu shot. Since I was crying and my eyes were red they were more compassionate today.

Good Days

It's been two weeks since my last chemo (I got an extra day this round due to scheduling around the holiday), so it was nice to be able to enjoy the Labor Day weekend when I wasn't feeling lousy. My appetite is back and we enjoyed a nice dinner prepared by our favorite Filipino, tacos out, and a Bardenay night. Right now my biggest dietary issue is staying well hydrated as the chemo has damaged my taste buds which makes food taste bland and water taste gross. It's tough to drink a lot without consuming too much sugar, any artificial sweeteners, or caffeine in the evening. Lots of green tea.

The nausea is minimal and my fatigue is best described as feeling like I had a bad nights sleep, so not too bad. We couldn't motivate for the annual Labor Day camping in the Sawtooths, but had good family time nonetheless. Since Ryan and I are not sporting to the usual level there is less tag-team parenting and the kids enjoy the time with us all together. Going through this with young kids is not easy, but there are some things that are probably easier than if they were older. My kids have pretty low expectations and just love to be with us. I'm sure if they were older they would have been more disappointed that we didn't do anything ultra special for the long weekend. We took several rides around the neighborhood, went to the park, gardened, and even took a group ride on a kid friendly trail. Seeing the enthusiasm on both of my kids faces to ride bikes with us is brings so much joy! And fortunately a group ride around the neighborhood or a toddler friendly trail is easier on my joints than chasing them around the playground.

I also had some time to do get some suggestions from friends and do some research for audio books in preparation of the days ahead that I'm bound to my bed. It's been a long time since I've "read" for fun. I also got a chemotherapy meditation cd from the social worker, though I'm not sure I'll listen to it. I'm still struggling with the whole meditation and "mind, body, spirit" concepts that people have recommended....a topic of another post maybe.