Wow. I can't believe it has like five weeks since I last posted. Wow!! For a while, I just didn't want to. Then I got updates/test results and stuff, and I just put it on Facebook. I just kind of avoided this blog... which is weird to me. But within the last week, or may be even two, I have been feeling like I should blog. I need to post updates for journaling purposes and to let others know, I need to post for whoever reads the blog, I don't know, I just need to. Then tonight I decided to read the blog posts of a friend who has a baby with many complications (she's still pregnant) because I honestly haven't taken the time to until now. It was very tender reading them and I just felt more and more prompted to come and update my blog. I have this feeling that it's not for me. I don't know... So... moving on to the updates....
Let me get my graphics because we passed 2/3 AND 3/4 of the way done with chemo!!
So there we have our images. :) I like my pie charts. It's really hard to believe that I'm almost done with chemo and, at the same time, it's not. But overall, the last four months really have flown by.
Next... I have a friend who Facebook-introduced to me to a lady who has a different type of cancer than me, but she has just started her treatments for it. She asked if she could give her friend my info and I said yes. Then, at my last chemo treatment, the head nurse, Jamie, asked me what I would tell another Hodgkin's patient because she had one starting his treatments that Friday. I honestly wasn't sure what to say. So I told her that I would still get the port, even though I hate it, and eat glazed donuts when the taste aversions come (more on that later). I've been thinking about that since last Monday and I still feel like I haven't come up with much.... (more on THAT later).
The PET scan.... (I seriously can't believe I have not blogged in five weeks...) IT CAME BACK CLEAR!!! I had my PET scan a week after my 8th chemo treatment (four month mark). I had the same tech guy, Kurt, and he even remembered me. He is so, so very nice. And he has a garden and horses and he's just a nice guy. And he has a mustache. Funny story... when I went in for my scan, because I was going to have them access my port for the radioactive sugar stuff, they called in a nurse. Well, the nurse who was called in to access my port was the same nurse who was at Radiation when I had my port placed. How funny is that? She remembered me, but it took me a bit to remember her. They go back and forth between Radiation areas (one in the hospital, one in the outpatient building). I asked her about my scar (its big and itchy and weird, unlike my other scars) and she said it looks like a keloid reaction or something, but I can ask the doctor who takes my port out about it (I asked her if they could fix it when they sew me back up :P). I don't think it's this keloid thing because, seriously, my other scar is beautiful. And the keloid thing is something people do when they scar, period. I think I'm spelling keloid wrong. Sounds right. Anyway, I'm also going to make sure I don't have a student stitching me up. :)
So back to the PET scan. Kurt got me all set up. I asked for his opinion on the least nasty drink combo for the intestine-coating stuff and he recommended Sprite. I also told him how last time it upset my stomach for a day and a half, and he gave me just a little bit less than usual. (Something like they usually give you 30 whatever measurement (mL?) and he gave me 25.) I was worried about this because I agreed to help watch a friend's kids while she worked that same day and I wanted to help, but I was worried I would be sick. I am happy to say that I was just fine! I was only a little bit sick that day, but nothing after that! It was great!!
I told Kurt I'd either be back in a couple months or three months after radiation.
We also met with the cancer radiation doctor, whose name escapes my mind right now. Oops. He's super nice and the nurses are nice and it's just another great office of people, it seems! Funny story... it's located in a really weird place and we walked up to the door and it had some "not a hospital entrance" sign on it or something, so we followed the signs that go with that one to the side of the hospital and ended up walking in through the back (hospital entrance side) of the office. We then had no idea where to go and had to be escorted back to the front, where we were parked and had not walked in. In our defense, we walked right up to those automatic doors and they did NOT open.
So the cancer radiation doctor is great. He actually showed us the PET scan results because we hadn't seem them yet (I had chemo #9, I think, scheduled for right after this appointment). He had talked to Dr. Rich and they were both VERY happy with the results. My scan was clear! This basically means that there are no cancer cells showing up! Which means... it's gone! Basically. :) Cancer cells do one of two things while they are being chemo-ized (I made this word up. I think it's great.) - they either shrink back to the normal lymph node or they scar down, like scar tissue. Mine scarred down. This means that in any subsequent CT scans I ever have, even ten years down the road, the scar tissue will be seen. But it's not a problem, as far as I know.
We discussed the plans for radiation and he explained to us how it all works. Radiation secures a cure rate for 10% of people who get it. That seems like a small number, but to that 10%, it means the world. The risks vs. benefits, with all of my factors (age, cancer, location, etc.) = me doing radiation. There is a direct correlation between teenage girls receiving radiation in the chest area and breast cancer, but he said because I'm older, that risks is VERY minimal and if I were his sister, he would tell me to still do radiation. I think it must be one of those risks he is required to tell us about, you know?
We will meet again in a few weeks, a couple of weeks before radiation starts, but according to their paper, they will give me little tattoo marks that tell them where to give me the radiation. The total time from me getting out of my car to getting back in it is 10-20 minutes each time, Monday through Friday for three weeks and one day. Typically, 3 months after radiation, they do another PET scan as a post-cancer baseline, but because our insurance resets in October and because this PET scan came back completely clear, at this point, he is willing to possibly doing just a CT scan (because they're, oh, $6000 cheaper). We will discuss this further in December and see how we all feel.
Then, twice next year (March/April and September/October - again, being understanding with our insurance), I'll have CT scans. After that, in years 3, 4, and 5, I'll only have a CT scan once a year, so long as all is well. Yes, it's a lot of CT scans.
We will probably schedule our next appointment with him next week when I go in for chemo #11!! Hard to believe #11 is here already!!
Oh... radiation is 3 weeks and 1 day long. It will make me tired, in an endurance tired kind of way. This is similar to how I am now. I have the desire to do things, and I try, but my endurance is just not there. He said this usually kicks in about halfway through radiation and lasts 10-14 days after. After that, it will take about three months for me to start feeling much, much better, though we also understand that it takes about a year before feeling 80-100% back to myself. It sure is a long road!!!
As far as why I'm still doing chemo if my scan came back clear... It is normal procedure to do an additional two months of chemo after a clear PET scan to make sure they got everything, including small traces that may not have shown up on the scan. So I shall finish my six months of planned chemo, take about 3 weeks off (they like to wait for your immune system to be back up post-chemo treatment before zapping you with radiation), and then start radiation about the first week of August. I may also have skin irritation from the radiation, but those two side-effects are pretty much it. I'll be honest with you, when he talked to radiation, it seemed like a walk in the park compared to chemo. I was ready to start then and there (but not in addition to chemo haha)! Like I really felt kind of excited for it. haha. I think it's also kind of exciting because it means the end really is in sight, and that's such a wonderful feeling. Well, the end of the treatment.
Now, because my PET scan came back clear, Patrick is no longer accepting my "C" card for most things. He says I'm cancer-free, so I don't have the excuses any more. I GREATLY beg to differ - I'm not even done with treatment! But he still gives me a hard time and tries not to let me get away with everything. At the same time... he is still super understanding when I get nothing done at home, when I'm super tired, when I want ice cream, etc. It's kind of funny. :) But he doesn't accept the "C" card anymore. He even told people at work this, haha. Whatever, silly man. :)
And moving on again...
The second ECHO test (first was a baseline, back in the beginning) to check on my heart since I'm retaining fluid like a champ.... It came back clear! I was worried because when they did the scan, the tech was teaching a student tech and pointed something out to her, but the docs all said everything was good! There is a suspicion by the NP, Nancy, that some of my fluid retention is because of sodium in my diet, particularly probably from meals we receive and freezer meals (because oftentimes meals prepared have cream of something - like chicken - in them and freezer meals are sustainable and may have more sodium, etc.). So she told me to tell the ward that I need lower-sodium meals. So I did. And I've been working on eating less sodium (because she obviously told me to cut back too), though the last couple of days I have NOT done well in that department. Nor have I been drinking enough water.
In case I didn't explain this before, I have been retaining A TON of fluid. So much, in fact, that my weight gain has reached a point where I would usually receive more chemo (just chemo to weight ratio), but they believe it's mostly fluid weight, so they haven't upped the dosage. My fingers are constantly VERY swollen (like end of pregnancy swollen) and they hurt/are uncomfortable. My belly is bloated and, frankly, fat. My feet and ankles get swollen too. Just everywhere... I'm swollen and uncomfortable everywhere... and it's because of fluid retention, chemo, and steroids. AWESOME!
So... how am I doing?
I'm tired. ALL THE TIME. Just plum exhausted. My friends, Cami and Elisa, and Cami's fiance, Justin, and Patrick, walked the Color Me Rad 5K last weekend, at the tail end of my chemo week. I need to blog about that separately, and post the pictures, but let's just put it this way, it's almost Wednesday (well, technically, it is) and I'm still sore in some places from that 3.1+ mile walk. It's crazy!!! I don't think people understand that. It just sounds like I must be really fat and out of shape to still be sore, but it has to be my weak little body. I took an Epsom salt and bath bomb bath tonight to hopefully help with some of that soreness. :)
Some other things...
The glazed donuts. I think it was 3 (maybe four) chemos ago that I started getting really bad taste aversions and aftertastes during chemo week. The first two weeks I got it, I had this nasty dirty penny taste in my mouth all day Thursday and part of Friday. It was awful and disgusting and certainly didn't help with the nausea. Well, two chemos ago, I ate a glazed donut and it took a lot of the nasty aftertaste/taste aversionness away. So I asked Patrick to go buy more donuts. I ate a lot of donuts that week. Last chemo week, I had them ready (as well as Gatorade, Sprite, and ginger ale). I ate a lot of donuts last week too. I plan to eat a lot next week as well. And two weeks after that. Then I'll be all donut-ed out. But it has helped! It's so weird. I told the NP and she was intrigued by it and said she's going to tell some of her other patients. I also told Jamie, the nurse, who said she would tell the guy who started chemo last Friday. I hope it can help other people because that taste aversion, penny, aftertaste crap is NASTY. It's just plain awful.
Speaking of awful... I told Dr. Rich and the nurses that I'm going to write "A Few of My Least Favorite Things", the chemo/cancer version of "A Few of My Favorite Things". I haven't started it, but I need to. And then I need to make a music video. Elisa said she'd do that. I just can't sing very well. Oh well, we shall see. haha. :) That penny taste will definitely be in the song.
I really haven't come up with what to tell another Hodgkin's patient to help them. Part of the reason is because I feel like I have been VERY blessed in all of this and, in some ways, it has been "easy" and I don't want to make anyone else feel bad or worse about their situation because I have been able to keep a positive attitude most of the time and because I really HAVE been blessed. I also told Jamie to tell him to have a sense of humor and she said he does. I felt like I really can't help the guy and that made me kind of sad. So I keep thinking....
But here's the thing... I really HAVE been very blessed in all of this.
I asked Nancy about my blood test results/counts because they always tell me they're a little bit down, but not much. I was curious about how they have compared from beginning of treatment up to this point. Well, before I started, I was actually a little bit anemic and I'm not now. And as far as my immune system, my count has gone from like 500 something to 300 something... or something like that. I can't remember for sure, but she said basically it's another miracle and crazy thing and it's just REALLY not that low! She said I can eat whatever I want, she doesn't care, because it's not that low! haha. (I'm still refraining to be cautious until the end of this shin dig, by the way.)
I still haven't lost my hair, like I should have MONTHS ago. I do have a lot of thinning, especially on top, and a place where it's almost bald at the crown of my head, but seriously, most people can't tell anything, and I still have hair. It's very weird to me and every time I go in they tell me it's a miracle. I also feel kind of bad about this. I have some amazing friends, and even someone who sent a package without telling me who they are, who sent me scarves, head pieces, etc. to wear when I lost my hair. I even bought some! And I haven't needed to use them. I have started to wear hats when I go out because I'm self-conscious about the thinning on top, but when I wear a hat, NO ONE can tell ANYTHING because there's just short hair sticking out. I actually feel bad for not losing my hair. It's very weird. But I feel like I also can't relate to someone who does lose their hair. And the strange thing is, I was so so so so so worried and concerned about losing my hair. It was a big deal to cut it, I cried many a night over the idea of being bald, and then one day I came to terms with it and decided that it would be okay to be bald. A part of me actually looked forward to it. It's sad and annoying to constantly be shedding and have to use Drain-O every few weeks because you've clogged the drains again. In some ways, I still wonder what it'd be like to be bald and think it's weird that I'm not. In some ways, I think it's harder to still continually lose hair and to have the thinning of what I think of as old lady hair thinning than to lose all of it. But basically, I feel like I can't relate to another cancer patient who lost their hair because I haven't. And I feel, in a small way, like I'm not a "real" cancer patient because of this as well. On the flip side, clearly Heavenly Father has blessed me and it has been a tender mercy that I still have hair. It's a HUGE blessing, really, maybe even a divine signature. He knows me so well and He heard my prayers and felt my tears as I worried about losing my hair. I don't feel bad for having cut it short because I think that actually helped it stay longer, but it's all just interesting and unique.
We are having family pictures taken in a week and a half by a group called Heal Courageously. The founder had cancer herself, just three years ago. They take photos for free to help you document the process. Part of me, again, feels bad for taking advantage of this because I am not bald, but I do have cancer, and I am physically different, and I do want to document this time of my life, and I want to document it with my family.
Oh, my eyelashes are basically non-existent, my eyebrows have thinned and apparently they are also turning white. I can't see any of these white lashes, but three trusted sources, including Patrick, Sarah, and someone else, told me there are white ones in there. It's weird. I busted out the eyebrow pencil my friend, Kelli, gave me 4 months ago just in case I would need it, the other day to go to a party. I wanted to feel semi-normal. And I did. The hair on the rest of my body has thinned or disappeared as well. Seriously, the hair on your head is supposed to go first because those cells are supposed to reproduce faster than the rest of your body. Apparently having slow-growing hair is now a blessing, not a curse. ;-)
Also, if I pick at something on my arm, it doesn't heal like it used to, nor do small scratches. So I have some spots on my arms that look like little brown spots because the area didn't bounce back and heal like it used to. That's weird too, but it does make me look more like a cancer patient. ;-)
And I am 20 lbs heavier. Hello, a whole different me. Yes, that is a lot of weight, and yes, I know it.
So that was a lot of update. I feel tired all the time, but I want to do things with my kids. They have done SO WELL with all of our crazy life changes for the last 4 1/2 months and in the last couple of weeks they have been struggling a lot. They are grouchier, meaner, and just overall not very well-behaved. They are naughty and it is exhausting me. Bella has been particularly challenging.
My friend, Sarah (also known as Lokey because I love and like her, thus, I loke her), came to visit for a few days. Bella behaved worse than she has in weeks, maybe even months, the entire time Sarah was here. She threw the biggest temper tantrum I've seen all year. I need to blog about Sarah's visit too. It was so wonderful.
I just don't know what to do with Bella and my patience is so thin because I literally don't have the energy to fight with the kids - particularly when it comes to bed time. Makenzie is recently afraid of monsters and bedtime, but I think, after two weeks, I might have a solution - keeping the bedroom door open at bed time, even though they USUALLY go to bed when the sun is still sort of up. But they've started a lot of nights in our bed and then I've had to ask Patrick to move them, simply because I don't have the energy to be the firm parent I need to be at bed time in order to keep kids in their beds (sending them back as they come out with reasons to stay awake, managing them when they scream and cry about going to bed, etc.).
Anyway, that's been difficult, but they have been good for so long, so really, it's okay.
Well, this was an incredibly long update and it's so late now that I'm REALLY starting to not be able to properly function. I'll post some more later with actual pictures and stuff. :) I know those are the best posts anyway. ;-)
2 more chemo treatments left!!! :) :) :) :)
