Les Symptômes Terribles

Ah, la vache!

Pour mon déjeuner, pêches tendues et du porridge de riz. Très sophistiquée, non?

Oui, non.

Yesterday I was pretty sick in the morning, which left me very hungry in the afternoon yet too gun-shy to actually eat anything, which made me feel even worse... Nausea and appetite loss really suck.

I got home from work and cooked up a steak in our cast iron skillet and wolfed it down. No issues, and I felt much better, for a while. I cooked dinner a few hours later but wasn't hungry. Part of that was likely because I had eaten just a few hours before, most of it was that I just didn't feel that great.

I decided to go to bed a little after that, and rest for awhile. I took Benadryl to help me sleep. One of our cats accidentally scratched me as I was playing with her, and I had a total meltdown. Yes, she drew blood and it hurt - but I was completely sobbing. I know it wasn't just because I had a cat scratch - I've had many "scratches" in the past years that have left me scarred and sore. This was minor, but I think I'd just had it. I'd been doing so well for a few days, it was defeating to have a crap day in the middle of nowhere. I'm over it now, for the most part - but the fact that I still feel weak and a little fragile is upsetting. I did quite a bit more walking (briskly, yay!) than I have in a while, and my hip and joints are suffering some, as a result. I'm waiting anxiously for my city to release the winter schedule for water aerobics so I can start that up again.

Today I managed to eat a bowl of cereal and not get sick, but I still didn't feel right. My head sort of hurts, and I'm (of course) tired. I brought leftovers from yesterday's dinner - locally made pierogi with sauerkraut and sauteed onions (yummy, minus onions) but I've not been brave enough to eat them yet. Instead, I am eating rice cereal (for babies) and strained peaches. They're easy on the stomach, but not as protein enriched as my doctors would probably like.

I got lab results back (at least, they were finally posted so I can access them). My hemoglobin and red blood cells are a little low, just below the normal threshold - they were evidently okay enough to continue treatment without a blood transfusion, but we'll see what happens next week. Thankfully, I am off treatment this week, perhaps that will give me some time to recover.

I am hoping to feel normal tomorrow, since we're visiting with family for Christmas. I need this time of year. Not for presents or anything like that, but it's just so warm and nice. It's really hard to be sad or mad at Christmas.

We went to a basketball game last week, and that was so fun! I bought a shirt and was as giddy as a tourist about it (even though our team lost). I hope we get to go to another game soon.

Happy Holidays to all of my readers, friends and family. I couldn't fight this battle without you. Love and caring are great medicines.

Maybe We're Crazy...

It's amazing the crazy things you'll do when you have to.

Sometimes when I'm sitting on my bed giving myself a Lovenox (blood thinner) shot I laugh to myself and think, "Who on earth would willingly stab themselves in the stomach with a needle?" but I do it anyway, because I have to.

I've had people ask me "Why on earth would you want to do chemotherapy? That stuff is POISON! Here, eat lemons instead." Wait, seriously? I mean, it's not like I *enjoy* chemotherapy - does anyone? I seriously don't see anything like this happening

This never happens.

...But you do what you have to do. Sometime it's unpleasant -  but that's the reality. There's science behind its efficacy, there's no science to your lemon juice enemas.
If there's one thing I've learned, is that you really need to communicate with your doctors. Anyone I've worked with has always had a "Help me help YOU" mentality. You don't feel well? Tell them. Some weird side effect? Tell them. ASK QUESTIONS. This is basic, but I've know plenty of people who would soon rather not go to the doctor at all, or wait until whatever they're going through is REALLY bad, or trust the advice of their doctor implicitly - no questions asked. I'm not saying doctors are bad, but you really ought to know about what they're doing for you/to you or prescribing for you and why. Don't gamble with your health!!

C'mon, clean bill of health...Aaaaaand, STOP!

An office co-pay costs a LOT less than a trip to the ER, or an inpatient stay. Do not ignore your body, because it'll tell you something's up - more often than not. I've said it before, if you don't have a Primary Care Physician, you need to get one. Mine truthfully saved my life. I may have cancer, but she found a blood clot in my leg that could have easily caused a heart attack or stroke. I'm grateful that I had a physician to assess me before it was too late.

I had my third round of chemotherapy in the clinical trial yesterday, and I have to say I feel pretty good. My legs are sore, but the previous two days I did more walking than I've done in a LONG time. Pain management is key, honestly. It took me a year, and multiple "Don't be a hero!" speeches from various nurses to realize it. My oncologist actually had the best words for me, and they were basically that if my pain is getting in the way of doing basic/everyday tasks, I'm not controlling it properly. I'd have to honestly say that was the very moment I started staying on top of my medication (with a couple of slip-ups, sorry doc).

I was given Benadryl for one of my pre meds, and it's wonderful. It helps to prevent allergic reactions and it has the added bonus of making you sleepy. My husband came to visit and I was evidently snoring through most of his visit. When I got home, I slept and then slept some more. The only gripe I've had is that in the past two weeks I get leg aches about an hour or two after I get home. Yes, I mentioned this to my nurse!

I was well enough last night to cook dinner for three people and I actually ate it all. I gained the four pounds back that I'd lost last week from being so sick - I suppose that's good? Now is not the time to diet, I know.

I'm looking forward to Christmas, especially if I keep feeling the way I do now. The worst thing I've got going for me now is fatigue, and that's been pretty common any time I've been in treatment. It's okay, I still go places and am as social as I can be, but some situations are still overwhelming. I have to sit down a bit, and got a little sore when I was standing in the kitchen for a long time - but it's easy to fix... Just sit down. Duh...

For the record, I still dislike Chipotle (though calorie-wise that's probably a good thing) and ice cream. Ice cream!? Blasphemy!! How could you, body?! No fair. No fair at all. I loved ice cream, and now it's just...Meh.

I think I'm experiencing my first real bout of chemo brain, though - and it's kind of funny! I haven't forgotten anything terribly crucial, more or less which exams people are taking at work and what day it is. Not a big deal.

Tonight I'll hopefully be able to bake some cookies, and attend a holiday party for a friend of mine. I hope I'm not too tired!

Simple Gifts

“It was only a sunny smile, and little it cost in the giving, but like morning light it scattered the night and made the day worth living.” 
― F. Scott Fitzgerald

I'm playing it cool right now. Not getting my hopes up, and not wallowing in gloom and despair. I've had two infusions in the new clinical trial and am feeling pretty good. There's a lingering fog, sort of - and I'm told that's normal. I'm not really as reliant on pain medications as I was (I'm taking them once or twice a day instead of religiously every four hours).

When I was in the grocery store with my husband yesterday, he seemed really happy. I asked for the reason for his grin, and he remarked that I was walking "fast". I have been able to keep a more reasonable pace in the past few days when I'm walking. I still get tired easily, and can't really stand for too long without having a little back pain, but this week is going much better than last week.

I got to the hospital Friday morning and had labs drawn, and then saw the nurse and doctor for an assessment. In the course of one week, I'd lost nearly four pounds from being as ill as I was. My lab work looked good and I was cleared to have the infusion. There was one huge difference between the first and second week, and it made all the difference in the world.

When you receive chemotherapy, it's pretty common to receive what are generally referred to as "pre meds" which is not a reception with a bunch of soon-to-be interns and residents - rather they're medicines that you take orally or via infusion that may combat some of the side effects of the chemotherapy drug(s) you are about to receive. When I was receiving infusions during my last round over the summer, I got an anti-nausea medication (Zofran or Emend).

During the first round of this clinical trial, I had no pre meds at all. I also hadn't eaten anything all day long, because I didn't know how the day was going to go, and naively thought I'd have time to grab a bite somewhere. I was also alone.

Don't go to a chemotherapy appointment alone, if you can help it.

I had a pretty bad reaction to the drug (heart palpitations, sweating, and something that starts with a "d" that I don't recall) and was given magnesium at the end of the infusion, which also made me terribly ill. Zofran didn't touch this nausea, and I was sick for days. I missed work on the following Monday because I couldn't stop throwing up. I seriously pondered quitting the trial.

I spent the week leading up to the next infusion pretty terrified and anxious. My Xanax was nowhere to be found (we found it Thursday). I really in a lot of ways, didn't want to go through with it. It's strange, but I somehow feel a sense of duty to continue this treatment. Not just for my own well-being and chance of survival - but for science. There aren't too many ALK+ out there, and it's very fulfilling to me to be able to help doctors and scientists understand what makes this disease tick. I feel like I'm giving back. I hope that the data they collect helps someone else down the road, and that makes me happy.

I don't want anyone to ever have to suffer through the things I've gone through, and it pains me to know that there are hundreds of thousands of people that are in pain, that struggle to breathe and wonder if they're going to have another holiday season with the ones they love. Someone always has it worse, and it's heartbreaking to me. We need a cure. We need scientists, doctors, and studies/trials.

The next (second) infusion came with pre meds (Benadryl, Dexamethasone and Zofran) and I have had almost no issues, save for some pretty bad leg aches the first night, presumably from the steroid. I've been able to eat a little better, and have been sleeping well. I get a little cold - but my red blood cell count and hemoglobin are slightly below normal (not in a concerning way) and that just sort of happens. The solution? Socks. Blankets. Warm drinks!

My mother visited for my last infusion, and plans to come for this week's treatment. It makes such a difference to have someone there, or something to distract you. My most positive experiences have been when a friend or family member was there to chat with me and keep me company. Otherwise, you just end up staring at the timer on the IV pole and wait for the time to tick down. Those of you that know me probably know that I like to draw and doodle. I've been chided by bosses and managers at former jobs for doing so, and even had my pens and pencils taken away by one particularly crotchety boss.

Before treatment I'll ask my husband what he'd like me to draw. Once it was a Chococat kicking a soccer ball. This last time, I drew Boba Fett dressed as Santa Claus. It's entertaining and sometimes a challenge, and it gives me a bit of childlike delight when I show him and say "Look what I drew you in chemo!" where a child might say what they drew in class. None of my drawings have made it to the refrigerator - but I haven't asked, to be fair.

Ow?

I actually don't even know that I'd want a drawing on the refrigerator. I'm a little old for it, aren't I?

Anyway, we're 9 days away from Christmas and it's bittersweet to look back on the previous year. I had been in the hospital through Thanksgiving and into the early part of December. I was very ill. This year, I feel pretty good. I'm far more optimistic. I'm nostalgic, I feel the need for warmth and coziness in some weird, homey Bing Crosby-esque sort of way. I need my people. My friends. My family. All the people I love. I need cookies, maybe.

I don't want to say the supposed improvements to my health are miraculous or miracle-driven, though I'm not opposed to referring to them as such - if that's your thing. There's a lot of thought, planning and hard work that went into this trial. There were lots of experiments, failures and achievements by tens or even hundreds of scientists and doctors who studied for years upon years to develop the brilliant and analytic minds they possess. Without them, I might not be here today.

“We have two options, medically and emotionally: give up or fight like hell.” – Lance Armstrong

I choose to fight like hell.

Un Poco de Todo

If this entry were a Jeopardy category, it'd be called Hodgepodge or Potpourri. I'm all over the place.

See that drawing, though? That's me. That's me last night, practicing to be some sort of human pretzel. I fell asleep in this position because I felt the least amount of pain this way. The illustration isn't wrong - I fell asleep with no covers on. I was roasting. The important part here, is that I'm smiling - and sleeping.

It's been about three weeks since I applied for the HSP-90 clinical trial, and there's been some drama in relation to the screening tests. I had to have a CT scan, an MRI, an eye exam and various lab tests. One of the lab tests they ran was for the pregnancy hormone, also known as HCG. A day after I have all the tests done, the Clinical Trials nurse calls me before I go into work. She asks, "Is there any way you could be pregnant?"

"Um, no?" I explain to her for various reasons. She tells me that my HCG level is elevated and that my test is positive. She tells me I'll have to have a repeat test, but assures me the level probably won't go up.

It goes up.

It goes up a third time. They tell me I have to consult an OB/Gyn to confirm I'm actually not pregnant. They offer no other explanation as to why this could be happening. I worry, panic, and think about how absolutely f*cked up it would be for a cancer patient with an IUD that wanted to have children and -tried- forever and ever to actually be pregnant. I call my doctor and I proceed to freak out. I tell her the levels the study nurse had told me (5.2/6.4/7.6) and she laughs a little, and explains those numbers wouldn't coincide with a pregnancy - that there's likely another reason for it.

Super-Gyn runs an additional test and determines that the HCG is coming from my pituitary gland, not my uterus. Which means...

Truthfully, this blows my tiny mind a little bit. Not because I can't have children now - I've made my peace with that and have decided that being able to  just survive would be AWESOME - but because I'm 36 years old and I'm going through the "Change 'o Life". It's funny and weird, but it is what it is. This is happening thanks to the chemotherapy treatments I started in the summer. 

If you're curious about pituitary HCG and peri-menopause, here's a science-y article on the subject. 

Needless to say, Super-Gyn sent a letter to the oncology department at the "other" hospital (which I don't like at ALL by the way, sorry) assuring them I am not pregnant. I think she even used all caps, at one point. 

My doctor at my "home" hospital really went to bat for me - and they always have. I'm not thrilled with going to another hospital for this trial... Not in the slightest. I miss my team, my doctors/nurses. I'd like to think they miss me. I don't feel like the folks at the new place give a damn about me as a person, but maybe I'll at least give them some good data. We'll see.

The reason for the first illustration of me sleeping in a weird way is because of some terrible pain I've been having. My left hip has been hurting a lot, which has been causing referred pain elsewhere, and some mobility issues. I can't really stand still for very long (showering was hell today). I know it's temporary but I seriously forget what "no pain" feels like. I miss

Christmas is coming up, and I really want to dive in. I want to put pine garland in the house, put up a tree soon... Bake cookies, the works. Hopefully my husband is down with this idea, because I really want to live it up this year. Did I mention that my husband is great? Last night he came to lay down next to me and we watched a TV show together. Every once in a while he'd rub my shoulder or hold my hand. Seriously, it was the the best thing ever.

Being with him is the best medicine/therapy, sometimes.

Move over, Movember.

I'm not going to grow a beard for "No Shave November". I don't think I could if I tried, really. Steroids gave me peach fuzz, that's it.

For those that don't know, The Movember Foundation is the leading global organization committed to changing the face of men’s health.

The Movember community has raised $559 million to date and funded over 800 programs in 21 countries. This work is saving and improving the lives of men affected by prostate cancer, testicular cancer and mental health problems.

That being said...

November may be a lot of things to a lot of people, but to me it's Lung Cancer Awareness Month. You can't masculinize or feminize lung cancer - though 1 in 13 men will get it at some point in their life, and 1 in 16 women will get lung cancer in their lifetime.

In 2014 alone, there have been about 224,210 new cases of lung cancer (both small cell and non-small cell), and about 159,260 have died from lung cancer this year. (source: cancer.org)


While the risk is higher for smokers, lung cancer is NOT a smoker's disease and shouldn't be dismissed as such. Just because you may engage in an activity that is a risk factor for lung cancer doesn't mean you will ever get it, however those who lead a perfectly healthy life are also at risk.

If you breathe, you can get lung cancer. 

That's why asking a person "Did you smoke?" is probably the most insensitive thing you could ask a lung cancer patient. The only person that should ask that question is their oncologist. Even if an individual smoked, you have no way of knowing that it's what caused their lung cancer.

...Even if it did, would you say a smoker with lung cancer is any less deserving of care or treatment than someone who never smoked?

We need to focus less on the stigmas of lung cancer, and focus more on understanding the disease so that scientists and doctors can find a cure. Funding research is the key to unlocking the secrets of cancer.

The government doesn't seem all that concerned with funding lung cancer research, though it kills more people than breast, colorectal and pancreatic cancers combined. (Source: LUNGevity)


Most of us pick our battles. I don't have a choice but to fight.

It's up to all of us to put lung cancer in the spotlight - it's already on a pedestal:

Source: Lung.org

Visit resources like LUNGevity, the American Lung Association and the American Cancer Society for ways you can help fund research. You can also visit the websites of local cancer centers for volunteer opportunities and ways to donate funds directly to the centers. 

There are often bike rides, 5k races/walks and other events that take place throughout the year nationwide, check to see if there's a lung cancer event near you. 

High There

I'm sitting in my office waiting for my husband to pick me up from work. Had I known I was going to finish as early as I did, I probably would have found some money for the bus and gone home that way. It's been two hours now, waiting.

Out of nowhere, a scent wafted through my office that smelled like an operating room. It lingered for a few minutes. I was not a fan. Ouchy memories.

I'm pretty anxious about chemo this time. I put it off for a few days because of the schedule at work this week, so I'm not doing it until next Tuesday. I also haven't heard about the PET scan I had this past Monday, so I guess I'm anxious about that too. My assumption is that if anything had been terribly wrong or there was significant (negative) change I'd have gotten a phone call. Who knows?

I don't think I posted this in my blog, but it's been all over Facebook and Twitter - I had an MRI (brain) a couple of weeks back and was told that the largest tumor, the one that is on my brain stem - is totally gone. It was actually a little surreal how the Radiation Oncologist told me, he said it in passing as if it was nothing. It's not nothing... This is a HUGE deal! Oh well.

I got Marinol for nausea and appetite, I chose it over Emend (which was 60 dollars for three pills, Marinol was 15 dollars for 30 pills). It actually worked really well the first few times I took it - I managed to eat an entire plate of food which was not a common occurrence the previous week or two. I took it over the weekend when I was on the way to dinner with family (so I would want to eat) and again the following morning. Dosage says to take it every six hours, but after an hour or two on Sunday I was sitting in the car (not driving, before you ask) and suddenly...

I was actually high/stoned. It was not happy or pleasant, and I slept most of the two hour drive home because I could not deal with how weird I felt. My only theory is that it had been about 12 hours since my previous dose and it hadn't fully metabolized in my system. Needless to say, I'm actually afraid to take it again because the experience was so unpleasant. I'm refilling my Zofran tonight, so that's good.

There isn't much else going on. I'm sleeping well, I'm pretty happy... The pain in my left leg has diminished immensely and I'm actually walking normally most of the time (unless I've been sitting for a long time). I bought some new shoes which are also amazing... And I also think that helps my feet/walking. I'm anxious to feel even better so I can start walking around the neighborhood.

That's all, for now. I went to Amish country but I'll talk about that another time.

I have a lot to say, apparently.

Sorry, this got kind of long.

I hung up my cleats for the season (Did I even put them on? Can't recall.) effective last Friday. We did a short bike ride of about 4 miles last Friday evening and while I felt fine at the end, the pain in my leg turned up a few notches and I was in agony for the weekend.

I had chemotherapy on Thursday (10/2) and am working today. I'd kind of hoped any stiffness or pain would hold off until tomorrow, but it has started already. It was interesting - for most of Thursday (after chemo) and Friday, I was pretty much totally pain free. I thought it was the steroids, but now I'm thinking it was the heated chair I was in for treatment on Thursday afternoon.

Tonight there's a party for the cycling team I rode for during the National Bike Challenge. I rode 248 miles over 58 days this summer. While I am in awe of those of my friends whose own numbers were in the thousands of miles, I'm pretty damn proud to have been able to get on a bike and ride at all. Unfortunately, my health did not allow me to ride more than I did, but that's okay.

That's not to say it hasn't been hard not to ride - physical limitations aside, it hurts me not to ride mentally. There's a Critical Mass ride? I want to go. I want to be there with my friends. I can't. Team ride? Same thing. I feel like I'm letting people down, and I don't know why. It's hard for me to put my health first, sometimes.

So anyway yeah, this party. My leg is so stiff right now, it's crazy. If I make it to this shindig I will warn you now - I'm not getting up once I sit down. I apologize in advance. Right now, I have to endure about a split second of excruciating pain every time I get up. Then, I can kind of walk. So if I wince, please don't panic. I'll be able to take some pain meds too - I'm a little less worried about being looped up at a party than I am about being looped at work.

My oncologist informed me that since my previous labs on 9/18, that my hemoglobin was low (it went from 10.6 to 8.2. I am to watch for shortness of breath and other symptoms, and labs will be re-drawn next week. If my hemoglobin drops again, I'll need a blood transfusion. I also have an MRI and a consult with Radiation Oncology to discuss how the CyberKnife treatments worked, and what my next step would be. Think happy, tumor melting thoughts okay?

The weather has turned cold, and I mean drastically. Yesterday it was in the 70s. Now, it's in the 40s. This could also be contributing to my "old lady hobble" as I like to call it. I feel kind of like hiding under the covers, but that's boring. Less than an hour to go at work, and then I can rest for a while.

After this cycle ends, I will have a PET scan to see where the cancer is active, or if it's active. A CT scan will show spots where cancer has been active, but will not display current activity. There will likely always be spots, even if the cancer goes completely away in an area - it's kind of like a scar. Then, I will have one more round of my current treatment, and then I will begin some form of maintenance therapy in hopes to continue controlling the cancer.

They found another mutation but it's not serious. I will update later.

Gripes

I really thought I skipped the aches and chills with this chemotherapy cycle, but I didn't. There's no sign of a fever, but the tiny hairs on my arms/legs feel like pins when they brush up against my bedsheets. It feels like I'm freezing, when in fact I'm wearing a sweater and pants (and socks!) while covered up in bed. It's kind of annoying, honestly.

I stayed home today because of the pain, and spent most of the day in bed with our cats. Tomorrow (I hope) will be better. In the meantime, I've taken pain meds and am relaxing in the living room.

So far, my appetite has been okay - I'm better off nibbling on things as the day goes on instead of having three meals. My husband made chili tonight and it was delicious - I think the spiciness really warmed me up. I feel less chilly now.

I really hate missing work, but I have to tell myself that this isn't the sniffles - it isn't some 24 hour "bug" that I have... It's a serious illness and I need to take care of myself. As obvious as that probably sounds, it's so hard to accept sometimes. I hope the chills stay away tomorrow.

I'm a foodie, HONEST! Pass the Lunchables.

Hook. Me. Up. 

Before I started IV chemotherapy I considered myself quite the foodie. I still do, really. It's just... None of that foodie stuff sounds good as of late, and even if it did - I'd be afraid to spend the money on something that will only repulse me 15 minutes later. 

Sorry, chefs.

My husband and I went to a barbecue joint sometime after the first chemo cycle started and I ordered a pulled pork sandwich. I know this place is good, I was looking forward to it. When the food came, I just...Couldn't. I picked at the fries and poked at the sandwich but never actually took a bite. We'd gotten to know the server a little by this point (it was our second visit, I think - and it's a local joint) so when he came to check on us and I hadn't had a bite, he looked concerned. I wasn't going to bring up cancer or chemotherapy, but I felt I owed him an explanation for not eating what was very likely amazing food (we can smell their smoker from our house, it's such a tease). So, I told him that I had just started chemotherapy and I apologized. He understood, said some encouraging words...And my husband got a pulled pork sandwich to take for lunch the next day. 

Some people have described things having a metallic taste, and the only thing that's happened for me with is plain water. Food either just doesn't sound good, or becomes completely disgusting 1/3rd of the way through whatever it is I'm eating. I was warned by nurses not to eat things I like when I feel this way, because it will ruin that meal/food forever. As of now, I'm ruined on Chipotle and Dewey's Pizza. Sorry. 

I presently love the orange chicken my husband makes. I haven't gotten tired of it, so far. I know this is a huge risk, but it's probably one of the few things that I'd still consider to be foodie-esque (I know that's not a real word) that I will eat. If he asks me if I'd want to have it for dinner, I will always say yes. 

Guess what I'm having for dinner tonight? Orange chicken. 

My birthday is coming up, and if I could really have anything in the world, it would be Toll House cookies from my mom, and fried chicken with mashed potatoes and corn (and dinner rolls) made by my dad.  Not pre-made and driven up here, either. I want them to come to our house. I know they can't, but that's what I'd want if I could have anything to eat that I wanted on my birthday. 

This is day 2 after chemotherapy, and I feel okay. I'm tired, and I'm a little stiff. My leg is pretty painful, but the heating pad helps. I stubbornly avoided pain medication today - partially because I couldn't remember if I actually took it. I'm employing the pill case again, don't worry. I'm in good spirits and have had a great day, overall. My husband ran errands and brought home BBQ brisket sandwiches from another local favorite, Mister Brisket. No frills, it was what it was. Delicious. We ate on our balcony/porch, but it was a little chilly. 

I'm on the last day of a three day course of steroids, and as much as I hate them, they've actually helped my appetite, I think. Also instead of Zofran in my pre-meds, I had something called Emend, a long acting anti-nausea/emetic. I like it. I can't take Zofran until tomorrow night because of it, but have been cleared for Compazine or Xanax (evidently that also helps nausea) if I need it. So far, so good. 

There's the chalk festival going on this weekend, and I think we're going to try to make an appearance. Usually I plan out a drawing, but I haven't this year. I may fall back to one of my roses (though I usually chalk birds), because they're so fun and calming to draw. I hope my leg feels better - or I might worry about getting off the ground once I'm done chalking!

There's a bike ride planned for my birthday by my friends who run Slow Roll Cleveland and whether I can ride or not, I will be there. If they promise to make it not hilly, I'll ride as long as I'm able. I miss my bike. With the pain in my leg, my doctor has cleared me for biking so long as it's not strenuous. This is where a vacation to Columbus might do me some good. There's a trail along the river that isn't hilly at all (there are mild inclines, but none I'd really call hills, unless you're exiting the trail and then still - no big deal). 

Back to the food thing, though. I have a food blog I used to write in quite frequently - nowadays I don't know how much help I'd be if I wrote "Chef _______ makes a great foie burger. Tasted like vomit two bites in. Rest of my table assures me it's delish and must be my taste buds.". 

All I can say is, 

Wow. Such incompetent. Very annoy.

I haven't been posting a lot here, because I've been participating in a blogging/journaling trial that pays me - so that has become a bit of a priority. Sorry, I'm all about the dollar dollar bill, y'all. (sarcasm)

I had an appointment today to talk about the CT scan I'd recently had (Monday) and was supposed to have blood drawn 20 minutes prior. Well, I get to the Central Lab (where they draw labs for people with ports) and my nurse doesn't have me on her list. We find out through some sleuthing that my lab appointment was placed at the normal lab (why?). Whatever, they correct it. Then about 30+ minutes later, my port nurse comes to tell me that they made the lab appointment...

...But didn't order any labs. This is the THIRD time this has happened.

By this point it's about 45 minutes from when I originally arrived, we've blown past my oncology appointment by 30 minutes and I am livid. I vow that I am going to walk out by 11:30 (this is when I was due to work) if something doesn't happen. I was able to see my doctor, but didn't end up leaving until close to noon - had someone not dropped the ball (I'm looking at you, oncology nurse) I would have been done much sooner and on to work.

Before you comment/ask, yes - I will be filing complaint. If it happens again, I'm switching to the Clinic.

There has been good response in my lungs with the new chemotherapy. The liver is questionable...My doctor said there was a very small amount of growth, but said that the old scan she's comparing it to was actually two weeks before I started chemotherapy at all, and it could be that growth happened during that time (one liver lesion grew a LOT in just four weeks, remember), So for now, there will be two more cycles of this chemotherapy and we'll follow up with a PET scan.

The PET scan will actually show areas with active cancer "lit up", A CT will show areas where cancer is or was, so it's not the greatest indicator of what's actually active right now. After the PET scan, we'll see what to do next.

I've been having a ridiculous amount of pain in my left thigh. Nothing showed on the CT scan, so the oncologist feels that it's muscular. I feel that it's annoying. Oxycodone just makes me numb and sleepy, and Flexeril kind of works... I feel like I'd love to jump in a pool to stretch it out, I don't know. My doctor just said to take pain meds and not to put too much weight on it (no running, lifting weights - she says non strenuous biking should be okay). In a way, I don't feel that it's good enough - but whatever. I don't remember doing anything to provoke the injury, I just want it to go away. I have moments where I can walk like a normal person, but they're few and far between. Otherwise, I'm afraid to get off the couch because it's probably going to hurt. I hate this the most.

My third cycle of chemo starts tomorrow morning. Ice cream is on the menu, I think. We plan to have a nice dinner tonight (before stuff starts to taste bad) but that will depend on the weather.

Toto, I've a feeling we're not in Seidman anymore.

The first couple of days after chemotherapy were like a terrible storm, for me. The nausea felt like it would never end, the fatigue just... Lingers. Food? You're funny. I never touch the stuff.

Zofran, please.

The storm clears a little after a couple days, for me. The one issue is this cycle, I'm also dealing with a pretty nasty upper respiratory infection that started as a sore throat - who knows where I got it. I was in the hospital 2.5 days last week because they thought I might have pneumonia - I don't.

Chemotherapy weakens your immune system, so there's certain things you're supposed to do (and not do). This weekend will be about 7-8 days away from when I had treatment, and that's usually when my "levels" (when I say this, I'm usually referring to my white blood cell count, and my red blood cell count.) are at their lowest. I'm supposed to avoid crowds and sick people. Did you read the entire list of things I linked? Yeah, chemo evidently turns people into antisocial, well-done meat eating veggie haters, or me anyway.

I cannot see, touch or smell raw meat cooking at this time - it's probably one of the grossest smelling things to me now. What do I like? Plain hamburgers from Wendy's, my husband's orange chicken, and ice cream.

- - - -

I wrote the above text a few days ago, when I seriously thought the end of the madness was coming. Nope, at least two more days of absolute discomfort from issues I don't really want to fully regale you with - combined with the nausea and lack of appetite from before.

Finally *knocks on wood* I am starting to feel a little more human. I now know the right combination of medicine to be as pain and vomit free without being looped out. Once the nasal congestion goes away (any time now would be GREAT) I'll probably only have to manage pain and the occasional nausea. I hope my appetite gets better, because I sincerely cannot imagine it getting any worse. I bought stuff to make creamed chipped beef, some of you might know that as "shit on a shingle" but that's not how we said it growing up. What was probably originally made by my grandmother as a cheap and easy way to stretch a 49 cent pack of dried beef and a loaf of bread is something I actually like from time to time. Yes, I know it's mostly butter, flour and milk - but lately I've been less about "How nutritious is this?" and more, "Is it food? It has calories, right? You can eat it? Eat it now."

I work one day (Sunday) this weekend. My husband is sick (same URI I had) so hopefully at some point we'll feel human enough to do something outside, maybe bike to the market.

I've tried staying positive these past couple of weeks and I'm presently just "staying" - as in, I exist. I'm here. I will be positive again, just not now. Don't make me do it.

Wigging OUT!

Unfortunately, my week-long getaway in upstate NY had to end. We got home this afternoon after splitting the 9+ hour ride home into two days (we stopped last night in Syracuse).

The drive out of the Adirondack park was pretty scary. At times, it rained very hard. The roads were mostly in good shape, but many lacked the little reflectors that we all probably take for granted most of the time. There were some curves/turns that didn't have reflectors on poles by the side of the road, and there were no street lights. We made it out, but it didn't get much better on Route 81! I was so glad when we finally stopped moving (in other words, arrived at our hotel)!!

We'd just enjoyed a dinner and celebration with a LOT of family members who drove/flew in to celebrate my Father-in-law's birthday. He really does a lot for us (and for the rest of his family) so it was really wonderful to have a day with so many loved ones that was all for him. It was really great to see people I hadn't seen in a couple of years (or more). It was sad that we had to leave so soon, but I'm back to work tomorrow. 

I was having quite a bit of pain in my left leg all week, but yesterday was the worst. Pain medication didn't touch it - but to be fair I only tried Advil, I did not want to take narcotics or muscle relaxers. I woke up today with significantly less pain, so that was nice. I can actually walk today without hesitation or limping. I've brought it up with my oncologist's nurse who thinks it could be anything from referred pain from bone mets, or just a muscle pull. 

This week I meet with my Radiation Oncologist to follow up on the CyberKnife treatment I had. We're not doing any scans, it's mostly just to discuss how I'm feeling, and to talk about any side effects I'm experiencing. 

My hair continues to thin, and it's getting to the point where it's annoying me. It sticks straight up most of the time, and it's very obviously extremely thin when I slick it down with something. Most people say it looks great, but I have a hard time believing it - I think it's mostly positive talk and that's great, but as I continue to pull away little bunches of strands whenever I touch my head - I tell myself the hair has got to go. 

I checked with my insurance rider to see if my plan covers wigs. Good news, it does! Bad news, there's only one networking provider and it seems that they only specialize in styles that pay tribute to 1970s power-butch lesbians. 

Rawr.

That's a fine thing to be, but the hair-do isn't my style at all. They only have 15 designs/styles and they are nearly identical. I looked elsewhere online and DAMN... Wigs are expensive! I'm not trying to emulate Beyonce, I don't need a lace front - but short of wearing a halloween novelty wig, I'm going to be out a few hundred bucks, at least. A friend of mine has offered to go wig shopping locally, where I am told I can find perfectly good options well under 100 dollars. 

Until then, I do not know that I am ready to rock the baldness - I still don't like scarves very much (I'm just not used to feeling them on my head, and they kind of itch) and there's one hat that I love, but it's not appropriate for all situations. I will continue my research!

That's all for now. I didn't even drive today but I'm exhausted (and getting sick, I'm afraid. I have a persistent sore throat). 

There's no place like...

I'm prepping for a second berry pie right now, the bottom crust is in the oven, the berries are on the stovetop cooling, and the lattice top is unrolled and in the fridge still. I'll put it together and bake it soon.

I'm on my first vacation since I was diagnosed with cancer, and it's great! I've actually managed to sleep - a LOT - and have been feeling generally well rested. My husband participated in a triathlon on Monday and that was AWESOME! We're here for a little bit longer, then heading home.

I woke up this morning not feeling very well, though. Lots of knocking in my chest, nausea, and I was/am cold. I have obsessively (but discreetly - Hi Mom!) been taking my temperature all day and I've got no fever, but chills can be a part of chemotherapy. I took a Zofran and my other dailies and powered through it. Most food has looked awful to me all day long, and I managed to be nauseated most of the afternoon - but I'm okay. I ate enough, and the company I kept more than makes up for the icky stomach.

Next week will begin Cycle #2 of Carboplatin/Alimta/Avastin. This probably means that Sunday will be my worst (and whiny) day. I'm excited to beat the ever-loving shite out of my cancer, so naturally I am looking forward to next Friday.

I also miss my house, and my cats though. The knocking in my chest is (likely) my lung trying to open up more. My breathing is fine, and I've had no fevers since I finished the antibiotics for the unrelated infection last week. The sensation makes me cough, which makes me wheeze a little - and that always makes me nervous. That makes me want to run home, fast. In one particular coughing fit this afternoon I told my husband I wanted to go home, now. I don't feel that way now, but the anxiety still remains. Part of me is not comfortable with being as far away from my doctors/team as I am. My husband assures me that there are oncologists and a hospital nearby, but I don't know them and they don't know me.

The last time I spoke at length with a doctor who didn't know me, she told me I should be considering hospice (this was November, 2013). I was highly offended and her words sparked mental trauma I still fight with once in a while. That hospital stay was horrid, and traumatic in many ways. So while I'm somewhat comforted that there are medical professionals nearby if needed, I can't stop thinking of all the things they can (and probably would) say to me. I'm having a hard time thinking positive about that scenario.

There it is, just a little brain dump. I wouldn't be human if I didn't worry some.

I'm so glad to be where I am, though - and with my family. The combination of my surroundings and the people I'm with make this trip so very therapeutic. I wish I could stay longer - but also have the capability to teleport my doctors here if needed. The weather was dreary today and so I think that's part of the reason that *I* was dreary feeling. My family is pretty damn awesome, though. With them I can weather any storm.

Time to make that pie, now. If you're planning on heading over, it'll be done in an hour or so.

TTFN!

Down With The Sickness

Hey there.

I haven't posted much because there hasn't been much to say, really. We're 75% unpacked in our new apartment and we absolutely LOVE the new place. I can't wait till it's all put together, it will be great. If I feel  up to it, I may hang curtains tonight.

I've been fighting fevers at night for the past two days, last night getting up to 100.4. We called the after hours doctor, but they never called us back. This is the second time I've left a message there and not been called back. I'm trying not to be angry about it - my own oncologist called me back this morning and spoke to me, so that's good.

I have an infection, and they're giving me Cipro to take care of it. That explains the fevers and general malaise. I still have achy legs from time to time, but have been biking to work and it seems that during the rides I am without pain (what better reason to ride more?). I stick my phone on the outside of my mesh pannier and put music on. It makes the ride a little more fun but it's not loud enough - maybe I'll get a bike speaker  - hey.. that one is also a headlight and it has a siren. I know what my next purchase will be...

n+1

Kidding - that's totally not the life for me. I do remember a few months ago when I said I'd buy a new bike once I beat cancer... I felt so close to the "end" back then - only to be told about the brain mets a little later. What a drag. I'm still going to buy myself a bike when this is all over... It's just going to be a much nicer bike than I'd originally planned on.

My appetite has been terrible lately. Today I basically made myself eat a muffin from Einstein's, and I drank a Boost. I think I'm actually hungry now, but I'm honestly not sure. I could go home and look at food and just think, "Nope." and not eat.

It's not that I don't know I should, or that I really need to eat something - I'm just not interested. Boost/Ensure is wonderful stuff for these sorts of situations, but they're no replacement for a nice hamburger! I wish that strawberries were still in season, I'd like to think I would eat those all the time.

Next week, I get a little break before the next round. I'm going to be able to relax some, and (hopefully) forget about what ails me, if only for a little while. Hopefully the leg cramps have fully stopped by next week. I'm down to about one cramp a night, and I've actually been able to sleep till 7 in the morning. It feels like sleeping in, though I know it isn't.

Oh no, they can't take that away from me.

It's about three miles from our new house to the office. How do I know? Well, I rode my bike to work today.

Despite having leg cramps all night long (please don't tell me to drink more water, I know!) my hips/pelvis weren't bothering me as much this morning so I thought it'd be a good idea to try a ride. Biking to work has pretty much zero climb (well, 112 feet but that might as well be nothing, over a few miles). It was actually chilly! I coughed a few times (which actually feels kind of good) but it went well.

I think what helped me be able to ride is the Flexeril I took last night, honestly. I started to get stiff and have pain about two hours after I got to work. I hope I can take it during waking hours, it'd be nice to have less pain/be pain free during the day.

Muscle relaxers aren't doing much for the leg cramps, though. The only way I ever have zero is if I lay flat on my back and am propped up somewhat. The act of shifting in bed, or moving my legs at all usually triggers the cramps. I will address it at the doctor tomorrow, but I'm hoping that they completely go away once the steroid is completely out of my system. I am on my last week of taper, and only take it every other day now (2mg versus 8mg in the beginning).

We're still getting settled in the new place - there are boxes everywhere! It's wonderful to be in the new place. It's beautiful and homey and just such a neat (big!) place to live.

Get MOVING!

I know everyone has had an illness of some sort where it seems like it's never going to get better.

I've been experiencing CIPN or chemotherapy induced peripheral neuropathy for a few days now. It has made me slow and a little cranky, not going to lie. One leg has a perpetual "catch" in it, and my toes feel like blocks of ice in the morning. I really don't like to complain publicly (or at all) so I'll leave it at that, but it doesn't feel like it's ever going away.

One of the solutions is taking steroids, and as I am now almost entirely tapered off Dexamethasone, I don't know that I'm actually willing to go back on it, long term. I know that's stubborn, but it's not like I can't manage. If I felt like taking a steroid actually drastically improved my quality of life, I'd do it - but I'd end up with leg cramps and pain from the steroid, anyway.

We had a great date yesterday evening, I had a pretty good appetite and managed to eat some pretty tasty eel. It's called Una-ju or Unadon. Barbecued eel over rice. Delicious!!

Pretty close to what I had.
Source: Flickr

It's so important to keep moving, even if it's at a snail's pace - and keep DOING! It's so fun and liberating to go on a date and have a conversation in public at a restaurant. Making googly eyes at my husband from across the table still makes me smile - after almost eight years - I hope it never ever gets old! 

Do stuff, seriously. If you're a cancer patient (or someone just not feeling good) with a serious case of the ouches and mopes (like me, sort of) then go outside anyway, if you're able. Two days ago I just sat out on my front steps and BS'd with my mom on the phone for a half hour. I felt the sun on my face and the breeze, and it was awesome. 

I am so glad that many have said that I'm an inspiration to them, but it's times like these I don't feel like I deserve the designation. I've been so whiny lately I haven't really wanted to post a blog, because I knew I'd complain. The thing is, it's okay to be annoyed with the crazy stuff that chemotherapy and cancer do to you.

I want people to know about these things, because they're real and they happen to people and there is unpleasantness and a degree of suffering. I don't tell you about these things because I want you to feel bad for me, to me it's no different than you telling me how your day was. 

Today is moving day! (and I'm at work)

I'm anxious to go home (I have two of those now) and to see my family who has come in from out of town to help. We have a few friends pitching in as well and I'm glad, because there is a lot to do. We have a cleaning team going to the old place tomorrow and Tuesday, but I'm sure we'll both have plenty to do ourselves. I'm sleepy now, so it seems a nice cup of coffee is in order - maybe when I'm done at the office! 

Stuff & Things

I am going to think carefully before posting too much in the coming days, mostly because I'm afraid that this blog will become a sounding board for my various gripes/side effects of chemotherapy.

I woke up with one of the worst headaches I've had in a long time. I filled an ice bag up and secured it to my head using a scarf that my aunt sent me - I must have looked a little silly while I sat there eating breakfast. At least my cats don't judge me - and if they do I can't understand them, so it's okay. I actually held off taking anything for it, and the headache is mostly gone.

Right now, I don't feel bad - but I don't really feel good, either. I ended up taking Zofran earlier (anti-nausea) and am currently picking at my lunch. I ate several strawberries (how I wish they were in season longer, Driscoll's aren't that great!) and a few pretzels. I'm tired but not that tired... It's like I'm in a side effect limbo, I suppose.

The official "big" moving day is drawing near!! My husband has been taking little carloads of things over recently, and each time one of the other neighbors has come out and offered to help him. On the occasions that I have been with him when this happens, I feel a little sheepish for not having armloads of boxes, myself. Pinterest has been keeping me sane, because I get to sort of pretend that I'm shopping for items for our new place. It's fun, and gives me ideas for later. I definitely want to decorate and furnish the new place like it's a home (it is, after all) so I can keep all my ideas neatly in one spot!

I have a lot of friends that are riding in the Pan Ohio Hope Ride, which involves biking 328 miles across Ohio - all in the name of raising awareness about cancer. I hope to do the ride one of these days, maybe (realistically) in a year or so. I need to work on this stupid cancer first!!

Jeni's Ice Creams brought back their peach jam ice cream and I am ready and willing to sample it, for uh... Science!

When I left the hospital yesterday, it felt like we'd magically transported to September. I love the cooler weather, though it means beach trips would be kind of chilly. I've only been out to swim at the lake twice this year, and I definitely want to go more - but the cooler weather feels so nice, it makes me want to be outside more.

I won't bother reporting on my Decadron/Dexamethasone withdrawals, they exist - life goes on. 

Soup sounds delicious right now. Do you have a favorite recipe? I'm looking at French Onion soup (my husband just picked up sweet onions at the market) and Posole. Post a link to your favorite soup recipe in comments if you want!

Greetings, from infusion!

My internet connection isn't great, but I'm going to try and post a blog.

I've been at the cancer center since about 9:45 this morning (I had to meet with my oncologist) but the appointment to see her was super delayed and we didn't get in until 10:30 or so. She explained the chemotherapy medicines (Carboplatin/Avastin/Alimta) and possible side effects.

We also got information back from Foundation Medicine - there are two more things (mutations?) that were found in my biopsy. There are some clinical trials that involve those new mutations, but the information on them is very limited, and we do not feel it's a good idea to deviate from our current chemotherapy plan. It's very good to have this new information though, because should newer treatments or trials arise in the future, we know that I could be eligible for them.

It's about 1:45 now and I have not gotten my first chemo infusion yet. We had to wait on some labs to come back, and they're ordering medicines to take before I start infusions (anti-nausea I think). I have to ramp the steroids back up today - but only for a couple of days. I was told I'll get tired, but that most side effects (if I have any) will be in a few days, or when we're supposed to be moving stuff. I know nobody will judge me for not doing much/anything in the way of moving but I still feel bad about it.

We went to a BBQ place last night for dinner, it's about a 60 second walk from our new place. It was really good, and we got to have dinner with two of our friends. We picked up some hard candy and snacks on our way home. I bought some lemon drops and some Kind bars (those are yummy). The lemon drops are great!

They did come in to set up my first infusion (Avastin) a little while ago. This first one will take about an hour and a half. I'm about to eat a sandwich that my husband brought over. This infusion is slow, because they have to monitor my blood pressure closely. I'll post more later!

A lot on my plate...

Get it?

We started moving stuff into the new place yesterday. It was so great to be able to go in and check things out. Can you believe I never actually looked at the bathroom? No claw foot tub, but it'll do. I love all the storage space we have. We bought a new bed, too. We'll have a guest bedroom and a bed for that as well. It feels like we're living in a real house (we kind of are!).

I'm continuing to taper the steroids. Yesterday was probably one of the worst (waking) days I've had with side effects. My face actually felt swollen (it still does, sort of) and I actually had cramping everywhere. My fingers seized up as I was slicing... An avocado (Gasp! More avocado talk! My interest in them is waning somewhat, though). My back tensed if I twisted a certain way, and my legs cramped several times throughout the day, while they normally only happened at night, before.

I was able to sleep pretty peacefully last night, I didn't wake up at all with a cramp - and actually didn't even take any muscle relaxers or pain medication. I took magnesium and potassium (as directed by the oncologist) before bed, so perhaps that's actually helping!

When I was told that I would start Carboplatin/Avastin/Alimta tomorrow, the doctor and nurse both told me to "eat up" because my appetite would go away, most likely. Today, I got similar advice in an online support group I post in:

"That's quite the combo you've got coming your way. I'm sure I don't need to tell you but eat up and drink up in the days before."

So, there it is. Tonight I think we're having barbecue (there's a rib place just down the street from our new place) and I've insisted on ice cream afterwards (if I am still hungry).

Speaking of barbecue, I am now somewhat fascinated by this list of the supposed 30 best BBQ places (according to OpenTable, anyway). Some of them aren't that far away from me and I'd kind of like to go to some of them.

I want to share something that has been going on for a while now, ever since I started having muscle weakness and pain associated with the steroids, anyway. I've been riding my bike to work but have found that my legs cannot carry me up the 5% grade to my house as of late. When I try, my legs will stiffen and cramp - I almost fell off my bicycle when I couldn't bend my knee to continue pedaling. My husband has been taking me home from work, putting the bicycle in the car. As much as I hate to do this, and as much as I wish I could ride more - I take so much pleasure in being able to make the short trip to work. Since I'm feeling a little better, I hope to take longer trips through the neighborhood's mostly flat roads.

It's such a little ride, but it's mine to make. I'm glad cancer hasn't taken that from me, and I'm glad that my husband is there to make sure I get home safely.

Busy

It feels like I haven't written in a while, but I don't want to check how long it's been.

Today I taper even more off of the Dexamethasone, and am down to 2mg per day. My side effects are getting a little better, though I still wake up nightly with leg cramps. Clindamycin has helped the skin issues, somewhat. In addition to my legs getting cramps, my fingers sometimes lock up and ache. I'm trying to drink more water, but I really do not like water.

We're moving this week, today is the first day we can actually start moving things in to the new place. I'm a little sad to say we really haven't been packing much, and I haven't been much help. The lack of chemotherapy and the humid weather conditions have left me exhausted and short of breath. I am experiencing pain in my lung and liver area, but nothing constant or severe. I haven't been able to ride up the hill to our current (and future, for that matter) apartment in a couple of weeks because of muscle weakness, but I may try (On the hottest day in a while? Am I insane?) today.

Going through treatment and dealing with side effects has been a delicate balance of knowing my limitations and testing them. Sometimes you don't know if you can do something unless you try!

Chemotherapy starts Wednesday morning, and it can't get here fast enough. It is extremely frustrating to know that the spot on my liver grew exponentially in such a short time - all I want to do is kick this crap out of my body... Right now, I feel like I am doing absolutely nothing. I know that treatment is on the horizon, and that's why I'm excited and staying positive - but it's still frustrating.

Awkwaaaaard...

I have an app on my phone that will fairly accurately track the distance, speed and route of my bike rides. It has a countdown function so I can press start, and have a few seconds to get on my bike and get moving before it starts to count time and distance.

Today I had to restart the countdown a total of four times, because I could not get on my bike.

1st try: Leg cramped when swinging my leg over the frame.

2nd try: Got my leg over and was straddling the bike. Could not hop on the seat.

3rd try: Same.

4th try: Finally made it on, but not without a little discomfort (leg cramping).

I smiled the whole ride to work because I thought it was funny.

This is how I roll. 

I may need to drop the seat a tiny bit until the cramps in my legs go away. 

I'm working an extra day this week so I can have comp time to go to NY in August. I totally forgot until yesterday. Glad my boss reminded me!

Someone saw my legs off, please.

Let me preface this by saying two things. First, be warned that I am going to whine throughout this entire post. Secondly, you should know that I HATE FAMILY GUY.

Hate is a strong word, and a strong word is required for how I feel about Family Guy. I hate it.

But, this is pretty much me - yesterday and today.

Yeah, it's totally like that. (PS: I still hate Family Guy)

The Dexamethasone can cause muscle cramps/weakness anyway - but it can be worse as you're tapering off the medicine. I'm drinking Gatorade, taking potassium and magnesium and still waking with leg cramps. In addition, I'm experiencing muscle weakness. I'm told this is normal - it's just annoying because for the past day or so now, I feel like I just shuffle along like an old lady (sorry to all the old ladies I know...I think you're adorable but when I imagine how I must look as I'm shuffling along in the grocery store yesterday, I totally picture you.)

I wish I could be so lively.

Sometimes I feel bad for not taking pain medication, but then I'd be slow and groggy. I don't like narcotics. I worry about Advil/Tylenol affecting my liver and kidneys (doctors have said moderation is fine). The truth is that I simply do not like pain medications. I take a Flexeril at night in hopes that the pain in my legs will be better, but it doesn't seem to be working. I'm tapering the steroid per doctor instructions, I just have to hope it gets better as I continue to taper - and manage the pain as best as I can with, I don't know... Bananas?

To end on a positive note, there are lots of charity bike rides happening very soon for cancer research. One is Cleveland Clinic's VeloSano ride (this weekend), the Pan Ohio Hope Ride (end of the month) and Pelotonia (mid-August). Though every person has their own reason for doing the ride, I'm personally thankful for all of the people who are hopping on their bikes and hammering out some miles for a great cause.

Coming up next blog...

Don't do it.

No, seriously. Don't shave your head - not for me. If you do, I'll have you committed (not really). 

But, we loves you!

Yeah, I know. But I got to thinking about this some after reading a Dear Prudie article on Slate the other day - where a person writing in asks if it's weird to want to shave her head to be in solidarity with her good friend who may end up losing her hair during chemotherapy so that she doesn't have to "do it alone". 

Here's what I think about it, honestly. Do what alone? When it comes to losing your hair with chemotherapy, if it's going to happen then it's going to happen. At least in my mind, it's far better that you exist - that you are my friend. Who honestly wants to lose their hair? Nobody, right? So why would you do that to yourself -on purpose- when you didn't even need to? I know. 

Consider this my formal plea to you, to not shave your head on my behalf. What can you do? Let me dust off an oldie but a goodie. 

5 Ways To Help A Friend With Cancer (via Huffington Post)

I really don't want you to shave your head. Seriously, you might look funny and you CHOSE to do it, so it's kind of on you. I (like Prudie suggests) don't want to see my bald or balding head in yours. Me and you? Any solidarity we have is because we're friends, or we're related by blood or because I married your son... There's a reason you are here. I'm touched that some of you want to shave your head - I am... But would you skip it, please? 

Bast Frands Forevar

Just be here for me. Pray for me. Eat a delicious brownie sundae for me. Do whatever awesome thing it is that you do, because it's important that we all keep being as awesome as we can, no matter the circumstances. Please, please don't shave your head for me. 

We good? Yeah, we good. Chemo starts next Wednesday, woo!

Things Change

I had a couple of scans yesterday (CT of the lung/pelvis & MRI of the brain). There was a bit of a scheduling/location nightmare and I ended up having a teensy meltdown (tears and all) but the folks at the hospital set things right.

Today we got the results of the CT, and they showed "significant" growth on the liver lesion (it went from 1cm to about 4cm) and growth in the lung. It actually kind of explains the pain and shortness of breath lately. I've also been ridiculously tired. I thought it was just the humidity

Because there was minor activity/growth on the liver while still on the clinical trial drug (though most areas were stable) and the growth was so significant after just 4-5 weeks... The oncologist felt that since I'm in fairly good health otherwise that it would be best to start IV chemotherapy next week.

I will be taking Carboplatin/Alimta/Avastin and each "cycle" of chemotherapy will be 3 weeks (one infusion during that time). I don't know how it'll affect me. I'm sad, but I'm not. This is a new treatment, this is a new chance to fight my cancer, and a new way to accessorize - am I right? I'm scarf shopping online, since it's possible I will lose even more (if not all of) my hair. The pre-tied wraps they have look terrible and are expensive, so I'm going to have to try and learn how to tie scarves creatively - or get a cute hat or two. Truthfully, I do not like most hats.

Right now I can barely stay awake. I would love to go home and take a little nap. Tonight, I think I'm going to try and get out of the house and have pizza with a friend. We'll see how I feel. Sometimes, I hate feeling like such a fuddy-duddy, sometimes I feel like a stick in the mud because I'm so damn tired. There's a reason I'm tired, and it's okay. I feel like I should get out of the house and do something fun this week - I might not feel like it at all come next week.

Weekend Recap

I've had a pretty busy and exciting weekend, I hardly know where to begin!

Unfortunately allergies or some annoying bug is in the air and I've been dealing with stuffy ears and throat for the past several days. Drinking a lot of fluids seems to help, though I keep forgetting to refrigerate my Gatorade, and that helps with the leg cramps that I get in the nighttime.

Friday I met with Beth from Lungevity, who came in from California to meet with me and a few other Cleveland area folks about putting on a fundraiser event in Cleveland in the late spring of 2015. We brainstormed and came up with some really good ideas. I'm excited to be a part of an event that will undoubtedly be fun, information and help raise funds for lung cancer research.

Saturday we went to the market and I got to test out my new sunscreen some more - it's called Sun Bum (SPF 30) and I wore it around noon, and again in the later afternoon sun (at the beach) and did not burn at all. I'd tried a few other things (Alba Mineral Sunscreen, SPF 30, Alba Hawaiian Sunscreen, SPF 45 and Coppertone Sport, SPF 50) and would burn without fail. So, looks like Sun Bum is the way to go for me!

We bought a sun shelter like this one (in fact it is this one) and brought it with us to the beach and it was fantastic. There was a lot of sand so it took some work to stake the umbrella, but it is amazing so far!

I realize that a lot of this post sounds like I'm a shill for sun care products, but I'm not!

I have scans today, which I think are part of the protocol for the clinical trial I'm in (MRI & CT). They'll also be accessing my port for a blood draw which is super weird (it doesn't hurt me, but the *snap* sound as the needle/thing hooks in is sort of weird and makes me feel a bit inhuman...). I'm pretty tired, but I think that has to do with the humidity and heat. We should have a reprieve from both starting tomorrow, for a day or so anyway.

I'm on the lookout for grocery panniers or other bags that will attach to my bicycle. I don't mind riding of course, but having a bag on my back (especially where the cross-strap hits right on my port) is annoying, especially on uphill treks. I've gotten a few suggestions and am mulling them over now. If anyone has any more ideas, I'm open to suggestion! When we move, we'll be easy biking distance to the grocery store. I don't want to have to drive to the grocery (at all, if we can help it) so they'll be useful then too!

As I briefly touched on in my last post, my hair has fallen out some. It's weird, if nothing else!! A good friend of mine was kind enough to give me a trim so it looks and feels a bit less obvious that I have bald patches. It feels nice! I'm completely okay with losing my hair - I may get some scarves or even a wig at some point (we'll see what happens with future treatments) but it's okay. It's only hair. It will grow back. 

I'm looking at a website that lists all of the cool stuff that goes on in our new neighborhood. There's so much fun stuff nearby, I'm excited!