Starting Chemo March 2015

Supernannymom

Hi There!

I agree with the ladies about work...you do what you can! I work from home like Princess...and my MO said at anytime if it is too much-she will write the order for me to go on disability. She was really great - she told me that with working full time, 4 kids at home, and life that something had to give, and it wasn't the kids or family- so the only viable option was work. My job is very flexible, so I will do my first round and then decide from there.

My first round of AC is Thursday...it is only Saturday and now with the port in, each passing day I feel a bit more anxious...I think it is just the vast amount of unknown. Since it affects us all so differently...needless to say with Chemo starting on Thursday. DH will be on Easter duty with the family!

Port went in on Thursday - it was really sore Friday. It is still sore today but not as bad...it just feel a bit strange!

Jackbirdie

Welcome, Sunshine.,

I think Italychick gave up you wonderful information about finding a dr who feels right to YOU! Who is patient, seems kind, but they have to be smart! You will only know that if you get smart yourself before you meet with him or her.

Like you are doing. read. Read all the articles bco recommends to you when you fill out in your diagnosis, they will recommend things you express interest in, and that pertain to your specific diagnosis. Read threads like this one.,we have a wonderful group and save each others' lives daily. Some have it much rougher than others, and most don't experience EVERY known SE. It's kind of a la carte. I was quite nervous a about the port.

My MO gave me no option. In the chest. So many treatments (6), blood every weeks for nearly six months. You won't feel it after a week. The problem sometimes with IVs (I've heard, not personal exp or medical training) that if your vein blows out during chemo it is very unpleasant. If you have the arm port, something about the way they are, sometimes can leak, though rare, can cause something akin to a chemical burn with Adriamyacin (sp?). Anyway, I dreaded it, dreaded another procedure after the bmx, but I appreciate it now after two chemos and about 5 blood draws. And it doesn't show no matter what clothes I wear. But I'll allow I'm not in my summer wardrobe yet. Then you can have it removed when you are done. Or leave it, but it will have to be attended to (flushed regularly). I think most people have them removed, similar to when it goes in, under non-total anasthesia, something they call twilight sleep.

You will find you are braver than you know, and you will find others to lean on while walking this very lonely road who understand. I wish you warmly the peace fullest possible journey.

Katy

DavisD

Sharon-Just thought you needed some extra positive thoughts heading your way today. When I re read what you said to Andrew, I realized I'm breezing through these posts too fast and that I had said the same thing to my hubby a few days ago (mine was mostly self pity and fatigue).

This is my daughter and I . Two weeks together living outdoors in the Blueridge Mtns.  I didn't realize how important this trip would be at the time but I think of it every day now..

 Don't know what I expected him to say but it sure wasn't "well it's your choice" with much indifference. You are the person that brought us all together and if you need more support just shout out and I'll try to pay more attention.  Diane

Italychick

Diane, beautiful picture of you and your daughter. What a great trip to be able to do.

I am loving the horse pictures. I haven't ridden for a lot of years, but whenever I did, I loved it.

I hope everybody has a great, minimal side effect day!

PrincessOfMeh

Diane, I so know what you mean about the pre-dx trip! Last year was an amazing year for me. I had a hit book, made great buckets of money off it, and oh, did I ever spend it. (Not enough on taxes, demonstrably, LOL.) One of my splurges was a family vacation with the kids, including my grown daughter and her boyfriend. We decided on Busch Gardens (roller coasters, woo hoo!) and Colonial Williamsburg for a week, rented a double condo in a nice, niiiiiiiice resort so I had a fully equipped kitchen. 2 of them, if you count the kitchen in the other condo. My standard of measure for vacas -- can I still cook? No offense against restaurants, but honestly, I enjoy cooking myself, which is massively helpful since my daughter's vegetarian and finding yummay veggie meals at restaurants = not so easy. Anyway, that's one of the bright shiny memories I bring with me into this fight. We had such a good time. And the KISS & Def Leppard concert getaway my husband and I did a little after that vacation. I wore a black leather corset, skinny jeans, and hooker boots -- was like being nineteen again. Awesome! 2015's gonna suck, no two ways about that, but oh my, 2014 was such a high.

That's life for ya, though, full of ups and downs. At least all this hit while I was coming off one of those really high up years.

Jackbirdie

dear Shaz- I want you to know, and Bekah too, that I think of you both all throughout the day, and am sorrowful and anxious for the pain you are suffering. I wish I could shoulder a small part of your burden.

I slept about five hours and feel much better. I hope I didn't worry anybody. I took a clonazepam, one only, an ambien, a half oxy any my normal BP med. Cleared it all with both doctors.

And although I have done some crazy things in my life, I have never had a psychotic break. I have brittle BP, but the problem is the hyper sensitivity to the steroids. I will manage. Sleep is imperative for several reasons, and I will see that it gets done. I had so much fun with Jack the other day, I'm going to try to ge outwith him today again, as I know the exercise will do me good .

I think I would have slept longer but Pauline (i blame everything on her now) knocked over a dark cherry juice sitting on MY NEW NIGHTSTAND!!! Arrrgggghhhh. I cleaned it up immediately and revved up immediately, so the day started at 5:15.

My brother sent a fun picture that I had completely forgotten about. He's a big shot with the government now, but once he was a lowly Radio Chief on a coast guard ice breaker. He was stationed in Hawaii. I went to visit him This is one of my 3 brothers who is still with us.

So you might remember a news story recently that a US Coast Guard Cutter was called upon by New Zealand to rescue a (Russian, I believe) fishing vessel, stuck in about 9 feet of ice near Anarctica. The Polar Star (which I believe is the largest non-nuclear ice breaker on active duty in the world, and NZ does not allow nuclear vessels in its "space") broke through the ice and order was restored.

So, going back to Hawaii, years ago, my youngestbrother and I sampled Waikiki's beach bars, searching for the perfect Mai Tai. After, we decided to go on an "unauthorized" tour of his ship, The Polar Star. The one and the same. We broke all protocol, me in flip flops and short shorts, which I had no business wearing, even 18 years ago. We entered the bridge, definitely not authorized, and he snapped a pic with my as big ass in the Captain's chair, in 1978. So, ok, maybe a little less nuts.

Jackbirdie

Diane- you and your daughter look like twins!

I love what you said to dear Shaz who brought us all together, and am so sorry that you had the same feeling, and it was met by indifference. It is not met that way here, I assure you

Jackbirdie

PrincessOfMeh I live vicariously through your skinny jeans, hooker boots, smut shoes, and all the glorious ways you live life. I toast you

Jackbirdie

I have so much more to say, but I think I better go out and get some exercise while I can. But before I go, first let me say....all of the horse pictures.......think you for sharing. Be still my heart. On my last manic wipeout, I gave everything away and moved to Peru. Opened a coffee shop. A real Italian espresso machine. But oops they drink Nescafé there. Prefer tea. They Are poor.

I spent all of my spare time learning to ride properly, the native now somewhat indigenous gaited horse, the one and only Peruvian Paso. I mostly rode a big, strong-willed gelding named Consetido (translated, conceited, thinks highly of himself- and he did) and I felt better than when I graduated from college or passed the CPA exam when Consentido's owner let me take him out alone, to ride alone on the deserted beach. I sometimes ran away to neighboring Ecuador, where never alone, I was allowed to graduate to a stallion named Pallido, 3/4 Paso, 1/4 Thouroughbred, grey and magnificent ( bred this way for size, as Pasos are small and American tourists are big), and we explored the magical mountains and valleys of Vilcabamba and its surrounds. I could have killed my myself several times. Pure exhilaration.

I wonder if I'll ever have a tale I can tell so breathlessly about almost, ALMOST I say, from dying of

breast cancer.

Sorry no pics. Thus the thousand words

Jackbirdie

Greenae: pics of the earrings! Please

so-she-did

I haven't put my story out here yet so here it goes for mysunshine and those who will be starting chemo in April and may be reading this thread in preparation. As you have noticed, everyone's story with side effects is different.

I opted for a port even though I am only having 4 infusions because my veins are deep, wiggly, and have tons of valves that make getting an IV almost impossible. My port was put in my chest a week before chemo started. I was put under with general anesthesia - 3 sticks and 2 veins blown to get the IV, which totally validated why I was having the procedure done n the first place! I felt like someone had punched me in that shoulder for almost a week and every time I bent down there was a lot of pressure in my throat. That sensation was gone by a week and a half out. I could also hear the blood rushing in my ear on that side.

Day 1: My first chemo took about 5 hours since they slowed way down when my mouth got warm and tingly from the taxotere. As I tolerated it, they increased the rate. They cytoxan caused burning and pain in my sinuses but I wanted to get the h*ll out of there by then and just let them run it full speed. That sensation lasted the rest of the night. I was able to take a walk and run and errand with my family afterwards but about halfway through the errand the fatigue hit BIG TIME. I wanted to just lay down of the floor of the store right then and there and sleep. I took my next dose of steroid when I got home and felt better. Had some brain fog and heartburn but Pepcid helped with the heartburn.

Day 2: I had fatigue off and on during the day and had some definite brain fog going on. I forgot where I was driving at one point and then proceeded to lock my keys in the car once I got there! I had some breakthrough nausea but a dose of compazine did the trick (I was already taking zofran). Neulasta shot this day.

Day 3: Super tired all day. I hardly moved from the couch. I'm not a napper but on this day I was! Neuropathy started on this day with my hands and feet being very sensitive to cold and heat. Also, my port site was sore.

Day 4: Oh, how I remember this day! This was when the side effects really started to kick my a*#! I had a sore throat by the middle of the day, a slight fever, and the bone/muscle pain hit me like a truck. I thought my kidneys were going to pop out of my back! Vicodin didn't even touch the back pain but did help with the pain in my legs. The port site was still sore and the sound of blood rushing in my ears was back.

Day 5: Muscles spasms, severe back pain, irritated feeling in my bladder, still needing to take anti-nausea meds and pepcid. Really bad night of sleep.

Day 6: More of the same but add in sternum pain. The pain would start in my back and radiate to my sternum, leaving me temporarily short of breath.

Day 7: More of the same. Really, really bad night of pain.

Day 8: More of the same in the morning and then, poof! Better! It was light a light switch flipped. Blood levels checked and all looked good. At least the Neulasta shot worked well and was worth the pain!

Day 9: Leg pain remains but back pain is so much better. Able to be off of pepcid and zofran. Energy is returning. Noticed that my arm pit hair is not regrowing.

Day 10: Neuropathy bad in right toes today. Tingly, numb, and sensitive to temperature. Not as much in the left foot. Fingertips hurt. Fatigue in the afternoon but that may have a little something to do with accompanying a large group of 2nd graders on my daughter's field trip!

Day 11: Still have neuropathy and still have fatigue in the afternoon. And now a really itchy rash on my right hand. Shedding some pubic (or basement, as my mom would say!) hair.

Day 12: Today! I still have neuropathy and bumps on my right hand but it doesn't itch anymore. Cleaning house today to get ready for my daughter's birthday party tomorrow. I'm so glad I will still be sporting hair!

I'm glad I have another week and a half of feeling pretty normal before this merry-go-round begins again. Next time my husband will be out of town and the girls will be on spring break so some extra support may be needed.

mysunshine48

greenae - What is Decadron?

so-she-did

decadron (dexamethasone) is a steroid and anti-inflammatory. Most of us are put on it the day before chemo, given it in our IV on chemo day,and take it several days afterward.

PrincessOfMeh

I am going to vibrate right out of my skin, guys. Vastly underestimated the fully leaded coffee to steroid ratio. Yow.

wrmbrownie

I completely quit caffeine for that reason...I've only had caffeinated tea once in the last three months and I couldn't go to sleep for hours.

Carrie37

Does anyone happen to know if they still give the Neulasta shot after Taxol? I seriously hate the shot. Claritin did nothing for me. 😕 I'll ask my MO but I don't have to see her until next Thursday during my #3 of 4 of A/C. Whoop!! Just in time to feel like shot for Easter. Cue sad music...

Someone asked about the port placement. I too have a purple power port. It was ?installed? When I had a lymph node removed so I was totally out for the procedure. It was healed in a week and felt strange for about 2-3 weeks. Now I hardly notice it unless my son cuddles against it. 😊 I agreed to the port because I couldn't imagine getting an IV every week for 20 weeks. They don't use it for every blood draw. Something about infection? They use a tiny needle for the blood draw on my off chemo weeks and so far it has been okay.

I get my steroid through my IV on the day of treatment only. No pills for me. I asked my MO if the dose could be lowered because my heart beats so fast after I have it and yet my body is so tired. I hate how it makes me feel. I'm a little nervous about it since I am reading some of your posts about how it helps fight infection. I guess we will see.

Thinking of you all and hoping you are having very minimal SE's today!

rleepac

Katy - thanks for thinking of me

Amy - I have the same pain on the pads of my fingers and your 1st course sounds a lot lole mine except I didn't get a rash but I did get dehydrated and have to go back in for fluids. FWIW...my 2nd round was much better. The 3 things we did differently were 1) they gave me a 'Sancuso' patch which I wore for 7 days after infusion. 2) I went back the next day for more fluids and 3) I have taken Claritin continuously.

Today has been my best day yet! I only feel mild fatigue but otherwise I feel like my body is once again my own. Hopefully this holds out until my 3rd round next Thur!

Bekah

so-she-did

Bekah - I took the Claritin the whole time but didn't get relief. I am considering doing the neupogen shots but he said it would require me going in for several days in a row to have my levels counted and get the shots. Not sure I can manage that with 2 kids on my own while my husband is out of town. May just switch to percoset and be a zombie who isn't in pain.

so-she-did

Love, love, love that scarf, btw!

SpecialK

carrie - most people don't need Neulasta while on Taxol, but it will be dependent on your counts, since you also did AC first.  The purpose of Neulasta is to prevent an opportunistic infection - so if your WBC is stable I doubt you will get it.

Trvler

Katy: I am so glad you got some sleep. And also glad to know you won't have issues with psychosis. Enjoy your walk. Loved the Hawaii story.

Diane: The trip memories are wonderful, aren't they? We went to Italy last fall and it is now my 'happy place'. I LOVE the BlueRidge Mountains. I used to live in Charlotte and went back and forth MANY times to visit my dad when he was sick with cancer before he passed.

So: I am so sorry you have having such a hard time. Take it easy and be kind to yourself.

Jackbirdie

thanks Trvler. Got a mile in at the beach. Almost fell asleep at the wheel coming home, one extreme to the other, jack had a blast, but I think I need to rethink any journey over 15 minutes during week 1. I cannot be relied upon to accurately assess my capabilities. It's almost 3 pm here now, day 3, feeling no appetite, back pain is starting again so I watered the garden and got back in bed. To heck with sleep hygiene .. I'm going to take it where I can get it right now.

KBeee

Amy, I kept a similar log last time. I helped me doing so, both when I went to MO, andjust knowing wha to expect round to round.

Karen, I go by KB more than Karen, so you can keep "Karen"!

Wish I could comment on everything; I haven't even started chemo yet, and my brain is already overwhelmed. In 3 days, I can claim chemobrain; for now, I will just claim overwhelmed mom

I love, love love all of the pictures. Crazy coworkers and I are shaving heads Monday. I will post a picture or 2 if I have a chance. I am in Minnesota for the weekend at a swim meet. When I return, it's go time!

Italychick

Bekah, I can't believe how great you look, especially given all the side effects you have had to deal with. Such a pretty picture of you in that scarf!

DavisD

My new bike I've only ridden twice before crashing...Just got an egg on my head, bike is fine!

Bekah-I love the scarf too and chica you lookin hot! I wish my skin looked that good. It's all itchy and red and purple on legs/back. Went to Ulta today and blew 100.00 on my VISA trying to find stuff to cover my face, ha!

Trvler-Our dream trip is to Italy! My DH grandparents were Sicilian and my daughter and son want to trace their roots. Some day!

Katy-Love the pic and memories. I didn't need to see more/could see it all in my head! I could take some lessons from you/I tend to say things pretty irrelevant before I get to the point. You always seems to say what you mean or what I think you mean. Glad you're doing better! My cousin has a Paso Fino and they are sooo smooth, at least that's what she says. I haven't ridden one but have ridden a Fresian trained upper level dressage/what a dreamcar he was. Horses do something for me no other interest or person has come close...Parents said I came out of the womb that way and so did my daughter.

Amy-I think we're almost on the same chemo schedule mine is 3/17 and I had many of the same symptoms. MO finally put me on daily prednisone 20 mg/I know it sounds like a lot and it is but with the Sjogren's I've had to take it on and off. Only thing that lessens the pain and seems to be helping the bone pain w/chemo too. My WBC count was "very low" and unfortunately they are planning on giving me what I call the "nasty shot" next time...said they can't start it mid treatment?? I thought others had but maybe not.

Karen-Sounds like an awesome trip! As far as my trip, I almost didn't go because I'd just had spine surgery and wasn't totally recovered. We slept on the ground, sometimes in a tent and frequently while she drove! She even wrote about traveling with her mom on "Live Outside and Play"  blog. Look her up if you want to laugh/cry.  (Jess Daddio) She's a vegetarian since about 10 yrs old and I have been since 2011 when I had DCIS/unimx.  I never ate a lot of meat to begin with so it hasn't been hard. I tried to be a vegan but I love dairy/eggs/cheese/mmm!  I wish I could start tasting again.

I realized after reading your posts, my life in this thread is way more interesting than my life on the outside!  If you don't get bored by horse and animal pics I will share some more. I love seeing everyone's dogs and cats too. I only have one old cat, one old horse and two young mutts left but they're my kids still. The two legged ones are 24 and almost 26! It would be interesting to hear the animal ranges and age ranges of anyone wanting to share.??

Shaz-Hope you're ok. You ARE the reason we all feel supported.  THANK YOU!

Theresa-I feel safer on a 1200 lb horse than a two wheeled bike! I just bought a hybrid bike in January as my gift for surviving two spine surgeries and proceeded to crash into a tractor trailer parked behind my office! Witnesses wanted to call 911 but I begged them not to. I really just rolled and couldn't get my other leg over to start pedaling and somehow I looked up and bam! Now I feel a little gunshy to get back on, at least until everything's working at capacity.

 

 

 

DavisD

Princess Karen-I took my brother to ride the steam engine train somewhere near Cumberland and almost missed it cause I underestimated how far it was...I think around 2.5 instead of 2 hrs but we made it and what beautiful countryside. We also go to Gettysburg whenever we have CW buffs come to visit and that's not far at all.  Just wanted to mention it before forgetting again!

shaz101

Diane, I love your photos. And the very accurate want of rubbing my head on the thick grass. Thank you for your comment regarding my pain. I was feeling so frustrated and "its not fair" mind. Andrews response was similar to your husbands. I think he didn't know what to say and just wanted to show his support in any decision I make.

Saying people who do exercise or work having chemo is so wrong! That makes me feel like I must be a weak or lazy person. I'm not... I feel like I have to defend myself. They probably say that because some people CAN work or exercise during chemo and they make some stupid correlation between them. These people probably would have done well anyway! Yesterday every movement caused further pain and vomiting to the point I was negotiating breathing! And I'm known for my high level of pain threshold. 

RANT OVER

Today is a good day. Just aching and tiredness. Stuff I can handle. Yay. 

Time to read through the rest of the posts. Thank you all, having this outlet is so helpful xxx

Carrie37

thanks for the reply SpecialK!

Bekah, I love your scarf! You look GREAT! Makes me want to rock a scarf.

shaz101

Diane, he's a warmblood. Such a lovely natured big boy. You and your daughter look like sisters! That would have been such an amazing time. I couldn't imagine getting my daughter out in the bush anymore. I think we did so much when she was young that now she clings to the city life. I also love your bike. I bought a bike and went though the forest, touched my brakes a little hard on the downhill run and you can probably guess the rest lol. Dented my confidence on the dirt I'm afraid. 

Katy I'm so glad you got some sleep, I was thinking of you yesterday when I didn't see any posts from you.  I was also wondering what your drink was in your photo...now I know 😊 I'm glad you got it all cleaned up OK. 

Bekah, geez you look great! I managed to put a hat on today, that's the extent of me dressing up, maybe tomorrow! 

Amy, thank you for your log. It helps me to see what others are experiencing. 

Theresa how did you go on your big ride?

KB I can't even imagine how overwhelmed you must be the second time around. I'm really hoping that you breeze through it. 

Italychick

34.4 miles today. I feel guilty posting what I am doing when I feel so bad for how others are feeling. I really don't understand the way it hits people. The only thing I can think about the nausea is that I am being given Aloxi (which I had never heard of) and maybe that is making a big difference. Plus my husband watches me like a hawk nutritionally and takes care of me that way. I honestly don't know.

But it was a beautiful day in San Diego, and I am just glad to be alive and enjoying it.

I have a 12 year old Italian greyhound who has had cancer for two years we are dealing with. Katy, his name is also Jack. He is my little love!