Chemo in May 2014

jsd44

Wendy: In terms of the financial expenses, one thought I had was talking with an oncology social worker. I haven't done that yet myself but I know my hospital offers free social work services. I'm wondering if there are financial assistance programs through your hospital or the state. When I found out my co-pay for Emend was $150 for 3 pills, the hospital pharmacy said that there was an assistance program, which I didn't qualify for, fortunately or unfortunately, and there was a payment plan option, which I opted for. Before all this happened, I didn't even know that such assistance programs existed.  

writinghelps

I'm going home today!

Thanks everyone for the ideas but I think we also fall into the "we make too much" to get any financial aid. But I am going to look around online and see what I can find about helpful resources.

 

noonrider

So glad you're going home!!! 

jsd44

Yes, Wendy, very  happy to hear you're heading home today! 

HomeMom

I've been somewhat lucky with the insurance so far. My BS was $450, my surgery was $1,056, the co pay for the Nuelasta is $29 and all my PS has billed me for so far is $4.88.  HOWEVER., I get this letter from the insurance company saying that they won't pay for the port. IT is "medically unnecessary" I have to call them and tell them I cannot put an IV in my left arm.  I can't imagine them poking my right arm every other week for 8 weeks plus taking blood as well. 

Tomorrow is round three---- ugh, almost there.

jsd44

I'm wishing you the best for tomorrow, HomeMom. My round three is Tuesday and while I'm on the upswing from the last one (took my daughter to see Maleficent for the second time today, *after* a visit to the park with dog in tow), I find myself dreading the next round even more than the very first one. I'm not sure why. 

On a different note, I was washing a canteloupe today (the onc nurse said to wash melons before slicing), I thought, "This feels like washing my nearly bald head." 

Cancer brings so many unexpected revelations. : )

Lakegirl1

I'm having # 3 tomorrow, too.   75% done!!!  We can do this!!!

jsd44

Yes, we can!

I'm halfway through my AC, then 12 weeks of weekly Taxol. But, hey, who's counting? ; )

noonrider

Hi ladies!

My 3rd round was supposed to be yesterday(Thursday) but I'm having some gallbladder problems that they wanted to check out before moving forward with chemo. That postponed me until today, which normally wouldn't matter, but the way my side effects go means I won't be functional for the 4th of July holiday. I'm a bit crabby about that. Ruin my kids' summer as it is, then wreck the 4th of July. I need to just get over it, I know.

My last round I had a ton of anxiety going in. This time I had NONE. I have 10 days of being non-functional after each round (5 days of nothing but sleeping) then 10 days of feeling fantastic. So, I have a total of 20 days left to be sick and I'm marking them off on the calendar. LIfe is good, and I have a lot to do when this is done. I'm leaning into the wind and digging in!

noonrider

Hooked up for round three. More than halfway to the end of this warped marathon! I sit in my chemo chair and look around the room. Yes, things could always be worse. Always. Seeing what some people are dealing with makes that crystal clear. 

debiann

You have such a postive attitude lespring, its inspiring. It is weird how you can plan for your bad days. I'll be missing a wedding.and my class reunion. DH said "maybe you'll make it to the reunion". "No, thats the day I have diareaha"lol. Sorry you will miss 4th of July, luckily it falls during my good week. Its the.grandsons first bday. Had to shop online, but at least managed to get him a gift.

Lakegirl1

Lespring....maybe if they get the gall bladder thing in control, it will help your SE's. Before I got mine out, the symptoms you describe sound a lot like my attacks. So, after treatment, I eat like I would have when I had a gall bladder attack. BRAT diet and lots of water and Gatorade.  I also do some chicken, potatoes, and pasta sans red sauce!!!!  That seems to help me. I have only had to take the anti nausea meds the night of treatment. I get a bad headache from the steroids, which makes me nauseas. Otherwise, if I'm careful....I have nothing that I can't tolerate. 

Hope you have more manageable SE's!!!

debiann

Here is a melancholy thought, if it weren't for chemo, what would you be doing different this summer? This week I should be in our boat at Lake Wallenpaupac, PA with my HAIR blowing in the wind. July I should be teaching English to refugees, but getting 2 tx that month so turned down the job. My tx end one week before I go back to work at the end of August, so my summer is shot, but maybe those of you getting only 4tx can still salvage some summer fun.

Anyone else have to change their plans? Anyone still going on vacation?

jsd44

debiann: Last year we took a BIG trip to France and Spain so this summer we were playing to lay low anyway. We were able to schedule my infusions around our planned week at the beach (starting a week from today!) so I was very happy about that. We would have probably planned another week or long weekend in Maine...maybe that will still happen if the Taxol regimen isn't too hard. There are smaller things I've had to give up, such as swimming at our local lake and drinking mojitos . But I teach college-level writing and literature and generally have an easier schedule in the summer so, thankfully because my SEs haven't been too awful, I've generally been able to keep my summer life fairly normal: gardening, reading, watching movies. I usually write and do research in the summer but I'm allowing myself not to do any, unless the spirit moves me. Fortunately, I just got tenure (yay!) before the diagnosis so the external pressure is off. 

There are, however, things I'm doing that I wouldn't have done if the diagnosis hadn't happened. I'm teaching myself to sew! I've already made two head scarves and just today I started sewing a sundress for my daughter. I'm enjoying creating without stress and it's a way to stay active without physically exhausting myself. I'm also baking more and, until her camps start, I'm enjoying down time with my soon-to-be 10 year-old. Her birthday is in just over 2 weeks, so I'm also planning for that.

I'm trying to see chemo as a chance to give myself a break, take care of myself, and wake up every morning saying, "What do I want to do today?" 

debiann

Jsd44, sounds like a great summer even without the mojitos. I used to love sewing, haven't done it in years. Chemo is a good opportunity to remember how to slow down. I'm spending more time just relaxing in the yard & sitting by the koi pond. I'm leaving the gardening to DH this year because I don't want to risk getting poison ivy, couldn't handle that on top of everything else,lol. We live in a wooded area and I'm very allergic to poison ivy. I keep thinking I should get something accomplished this summer, I'm not very good at relaxing,old habits die hard. Maybe I should paint the living room?

We have a VERY sick dog this summer, she has inflamatory bowel disease. Trying hard to nurse her back to health, still touch and go, so we'd probably be skipping vacation anyway.

What college do you teach at? I teach middle school/high school students who are new to America and do not yet speak English.

jsd44

Hey, Debiann--I saw that you often teach English to refugees in the summer, which is awesome. I've tutored immigrants in English, as a volunteer, and I love it. I teach at Springfield College, a small, private college in Springfield, MA, mostly known for athletics and health sciences. Last year I taught a new course on immigrant lit, which I'm planning to teach again this fall, if all goes well. I am applying for a 2-course workload reduction--I usually teach 4 courses a semester, which is a lot for English (all that paper grading!), but I hope to keep the lit course and a creative writing course. I think I can handle it. In any case, I admire you for 1) teaching at the middle and high school levels; and 2) teaching non-native English speakers (though I also envy you a bit, too, for that because I love working with ESOL students).

We have a lot of poison ivy, too. Ugh! But fortunately it's on the edges of the back garden so I stay far away from there. I know what you mean--who needs one more annoying health issue!

I'm sorry to hear about your dog. We have had a dog since last August and he's become another child to us, and I can imagine how hard it is to see a dog decline. We have always had cats and they're our babies, too, but there's something about how attached our dog Sparky is to us that makes him seem even more like another human.

writinghelps

Hi everyone,

Glad to see the conversation pick up here.

We don't really do a vaca every year. But I was looking forward to the summer anyway. And just like everyone else sad treatment took it away.

I hate chemo with the fire of a thousand suns.

I had an appt with the NP in my onc's ofc on Friday. I felt like she wasn't taking my face rash too seriously. Then i showed her the picture of the worst day and she seemed to change her attitude. She pushed chemo back a week. And took my off of the after-chemo steroids. I guess everyone keeps thinking it's the steroids. I think it's the Taxotere.

While in the hospital I got the attitude "I'm done" and was ready to quit everything. I still feel that way. I won't of course, but really dreading the rest of this treatment. Round 3 scares me because of what I've been reading.

I did start acupuncture right before round 2. I think it is helping with side effects.

We've had a house guest this weekend and he brought his two dogs, a golden retriever and a jack russel puppy. It's been so fun to have them around. I'm more of a cat person than a dog person but I have really wanted a dog this past year. So has DH and the kids. But we've been waiting for finances to get better. hmpf!. We have a 1 BR apt available to rent on our property and hope to get that rented out so the income can help pay the mortgage and free up money to pay off some debt and possibly get a dog. But it's been hard to focus on doing what we need to get it rented.  Maybe I could use my delayed week to get things going.

On the topic of Creative Writing - I developed an interest in this several years back. I am mostly self taught and I have always wanted to take a creative writing class, jsd44. I'd really like to submit my work and possibly make a little money here and there but I don't have the confidence to send it out. Actually, I rarely finish pieces. I think I lack some confidence related to the whole process of writing. That's why I keep wanting to take a course. Jsd44, can you recommend any books or free online courses? I've read most of the default books (On Writing by Stephen King, Bird by Bird by Anne Lammot, Writing Down the Bones by Natalie Goldberg, The Artist's Way by Julia Cameron (?).

Since I've read The Artist's Way I have been doing the morning pages almost every morning for over a year. ANd it has helped me so much (hence my name 'writinghelps'). It's become like breathing. It's such a great release valve for all the stuff that builds up in my head.

Sorry this is so long and also, sorry if I have repeated myself from a previous post. I always feel like I am sharing info that I have already shared and i'm really just too much of a lazy a** to go back and check previous posts ;-/

Peace,

Wendy

 

jsd44

Gosh, Wendy, I think the best writing advice I can give--you've read many of the writing guides I know and more--is to WRITE. Just keep going. (Of course, I'm always bad at following my own advice, but, as I said, I'm trying to give myself a break this summer.) The other tip I have is to find a writing group. Sometimes it helps to take a class and then find other writers whose feedback you like and try to start a spin off group. I find reading other people's work-in-progress and giving and getting feedback to be stimulating--though it can be hard to take criticism if you're not used to it. Not many writers (of fiction and poetry, that is--nonfiction can be different) make any money at it. Most literary journals pay nothing except free copies. It usually costs money (in postage or submission fees) to submit work and it takes a very thick skin to get the rejections and still keep sending stuff out. Oh, one other thought: Poets & Writers is a great magazine to read for craft and for the business side of things. So, in a nutshell, write, write, and write and -- as you already do -- enjoy the process of writing. 

Btw, I'm sooooo glad you persisted about your rash with the RN. I'm still learning how much we have to advocate for ourselves. I'm having terrible sleep problems--finally got a decent night's sleep last night. I'm already on Ambien, which doesn't seem to help that much, and the Decadron keeps me jittery and restless, which may be why I'm dreading the next infusion so much. My MO suggested cutting down the steroid since nausea doesn't seem to be a problem, but she also wanted to put me on Lorezapam. I don't want to go down that road again; I was on it for years and it's *highly* addictive and it took me a long time to wean myself off. She kept pushing it but I put my foot down. I'm going to bring the insomnia problem up again at my infusion on Tuesday though--there have got to be other options. I've been trying to be good about taking naps, getting mild exercise, not too much caffeine, etc. but insomnia is a powerful beast.

I think I'm winning for the longest posts....

debiann

Dogs are a wonderful addition to a family. I have 4, I'm a sucker for rescues and strays. But they are expensive, even when they are healthy. Food,  vaccinations, flea and tick products quickly add up. When they get sick the vet bills are unbelievable. Take a sick dog to the vet and they immediately want bloodwork & xrays. I just heard yesterday that the brother to my English bulldog is being put down because he's sick and the owner can't afford the bills. He's only two years old:(   My pitbull was sick last summer, her bills added up to $2000. She seemed to fully recover. She's.a wonderful young dog so it seemed worth it, even though I had to cash in savings bonds. She had bad diareaha this year and $1500 later they are  saying its a chronic condition, inflammatory bowel disease, may not even recover. She is so skinny now, can't seem to put on weight. The specialized food they currently have her on is $4 a can x 4 cans a day! The bills add up gradually at first but before you know it you have a whole lot invested and you don't want to turn back. I love my girl, hope she gets better.

Ddkath70

hi all!  I posted awhile ago, but wanted to jump back in. I just went through round 2, so I'm half way done! Yay!  My hair fell out exactly 15 days after round 1, but it's been growing back. I'm wondering if it's gonna fall out again or is this it and it will continue coming back. 

I also wanted to share that for the second round I asked for the patch behind my ear for nausea, scolpomine..or some thing like that. And it made a night/day difference. My second round went smoothly but the fatigue was worse and of course the shot from hell (nuelasta ). I was able to get it delivered to my house so at least I didn't have to go back, but the pain is so intense I can't even put it into words. I also run a fever from it. It's by far the worst part of chemo for me. My copayment for neulasta is $200! So I have to pay $200 for the worst pain I've ever experienced. Lol. But I have to remember that chemo and neulasta are the medicine and the cure, not the disease. However, I do like how you put it Writinghelp, "hating it with the fire of a thousand suns". Lol. 

Debiann, we have 5 dogs and all are rescue saves. I literally have to stay away from adoption days because I cry. It is expensive, but they are my life. We don't have kids, we have 5 fur babies . they lay with me the whole time for 6 days, and I know they know something's up. 

Hope everyone is doing well!

Ddkath

debiann

Ddkath, you never know were you'll find a furry baby needing rescuing. Last year we went to a kids bday party. They hired a guy to bring a pony and a goat.

The young goat was in such bad shape, underweight, hooves so long she could barely walk and disgusting dingleberries hanging from her butt. Who would bring an animal like that to a party? The pony seemed ok. We already had 3 goats, so whats one more so I talked the DH into buying her.$75 for a sick goat. Plus the guy says he has.her twin sister at home did.we want her too. Of course we.did, $125.for both.  Their hooves were so long they.were starting to curve. Took months of gradual trimming till they could walk right. Here's a.picture from the winter, with their fluffly angora coat. That has now shedded a they are a silky red, need to take more pics.There names are Bonnie and Bella.

noonrider

Summer: This is the first year in 5 that we haven't been saving for or financially recovering from an international adoption. We were looking forward a couple road trips with the kids, kids going to summer camps, landscaping projects, the new garden yada yada yada. All of that went down the tubes. We have one camping weekend with extended family planned on the 10th, but I'm really nervous about it. LOTS of water, and we have 5 kids with Down syndrome, 4 who can't swim, two who are OBSESSED with water. I don't think they'll be out of life jackets all weekend. LOL We live in MN but a couple years ago my son had spinal fusion surgery at Shriners in Philadelphia. He's supposed to go for a check up in July but there's just no way. I think while DH is working I'll road trip all the kids out to Philly in August since now one of my other kids needs to be seen too. I love road trips with my kids and I'll done be done with chemo feeling good!

Dog: We have three dogs (just lost our fourth a couple years ago) and we used to breed. I'm also an obedience trainer and two of my dogs and I are certified for therapy. I LOVE MY DOGS!!!! They are amazing with my kids, four of whom come from traumatic backgrounds. Our dogs are now 9. 8, 7. The 9 year old is starting to decline, the same age his mom was when we put her down due to cardiac cancer. Just subtle things I see in him that tell me he's changing. We had a grooming party at my house after my first round. My dogs were a mess and I just didn't have the energy to get them done. My dog friends all came over and bathed/groomed my dogs. It was great, and now my dogs can lay on my bed with me again. 

Writing: I started blogging nine years ago. I love it, but my blog has suffered lately. I mostly blog with a target audience being parents of kids with disabilities, but cancer is trying really hard to take over my blog. I'm trying not to let it but when I'm "down" I don't have any energy at all to write and when I'm "up" people want to know how I'm doing. So there it is! Cancer on my blog! I'm trying to pump out some posts I can schedule to publish ahead of time so there aren't so many lags because I do get paid (a tiny amount, but it helps!) and I don't want to loose my contract. This summer I also wanted to attend a couple weekend writing workshops with some friends, but that isn't happening. Next year! I'm telling you 2015 is going to be "The year of Leah!" as I make some changes in my life, taking care of me in a lot of different ways that have been neglected. 

I just had round 3 on Friday. I'm still awake!!!! Round two the fatigue hit me immediately before I'd even left the chair and I slept for several days! This time I'm still on the steroid high. I get the neulasta shot on Monday (tomorrow) along with a bag of fluids, then another bag of fluids on Thursday to get me through the holiday weekend. I keep thinking "Wow, maybe the fatigue isn't going to hit!" but I know that's not realistic. Although I'm not full of energy right now, I'm not in a coma either like last time. Dreading that hitting. 

debiann

Lesping, I"m about an hour away from Philly. Let me know if you take that road trip, I'd love to meet you.

jsd44

I'm continually amazed at how much our various co-pays can be. I'm really surprised about the Neulasta shot, Dkath70. It seems criminal to charge that much for something that is absolutely medically necessary. I got a bill for my PET scan the other day and misread it thinking we had to cough up over $2000. I was already calculating all the things we'd have to give up. My DH fortunately explained that I had not read it correctly and we only owed $100. Thank goodness. 

Debiann: Bonnie and Bella are adorable! I love hearing when animals find good homes. Like Dkath70, I always want to take home all the animals at the shelter. Fortunately, when we found Sparky at the shelter, he was the first dog we asked to walk, but still I keep thinking about this little black poodle with an injured leg in a nearby kennel....

lespring: I need to check out your blog! My feeling is that if you are moved to write about cancer, why not? It's a part of your parenting experience, too. 

Okay, now I need to go take my required nap....

debiann

I was a mess round three till I got fluids. They are magic! I was drinking plenty, but it wasn't working. I'm now doing better than I did round one or two, much less fatigue. I think I almost feel normal today, although like I told DH I may have forgotten what normal is. I want to schedule fluids for the next three rounds, rather than waiting till I can't lift my head off the pillow. Maybe fatigue won't hit as hard this time lespring.

Ah, the shelter, a risky place to go. My mom wanted a dog, so I took her and she found an.adorable Havanese. I unexpectedly came home with my pitbull.

noonrider

We schedule my fluids. I can always cancel if I don't need them but I usually do. I drink a lot but with the severe diarrhea I get the fluids just go right thorough me. I need the electrolytes and my system has to get AHEAD of the diarrhea. Usually once I get rehydrated the second time I'm feeling great within a few hours and stay really well until my next round. Only one left!!!

writinghelps

"Only one left" lespring,  YAY!!!!! 

noonrider

Does anyone on Taxotere/Cytoxin not do the Neulasta shot. C/P my blog post here so I don't have to retype it. 

Normally I get my chemo on a Thursday then 24 hours later get my Neulasta shot. 

But last week I had a little glitch with my gallbladder, causing chemo to be postponed until Friday. That meant I had to wait until today (Monday) for my Neulasta shot. I also got rehydrated.

Interestingly I didn't sleep for the first 4 day after chemo like I usually do. Instead I've had a hard time sleeping much at all. A couple hours here and there. But today I got that Neulasta shot, and now I know what makes me sick. Its that shot! The bone pain started within 2 hours of the shot (I knew the bone pain was from the shot) and tonight I'm exhausted and running a temp.

I only have one round left. I'd really like to do that round without the shot. Its not like I have another 12 rounds left of counts going up and down. Its my last one. I wasn't feeling too bad until that shot today. I'll talk to my doctor about it when I see her on Thursday.

Thats the update for now. I'm headed to bed and will probably not be online much over the next couple of days. Trying to let my body recover so I can participate in our Nation's holiday this weekend. 

debiann

Of couse I'm not at the end of chemo yet, but I have heard others say they didn't do neulasta the last round. Hope you are feeling better soon! Will you be getting radiation?

noonrider

If I ever get around to submitting my genetic paperwork I'll know about radiation. If have the genes then I'll have a mastectomy. If not it'll be radiation probably starting the end of August or so???