Starting Chemo, November 2013 Group

Amazon - I have a rash on my head, of all places and pretty much can't wear my wig as it is so itchy. Yesterday, I had dinner with a bunch a friends and HAD to take my hat off as I was ready to scratch my scalp off. What a reaction!! It was like suddenly everyone realized how sick I really was. It is amazing how our hair can change our looks so much. I can't wait to have some again!! I'm glad to hear your doing OK,  Amazon. Geting out in the sun is soooo nice.

Lisa - Good luck tomorrow. Anything you can do to make it easier on yourself, the better. You will be in my thoughts.

I have my biopsy this week on my right axilla. I am not looking forward to it, as my DH is away this week, so I will be going it alone. I really struggle with what I should tell people close to me so would rather keep stuff to myself and deal with these appointments alone. It gives me time to 'digest' whatever they tell me.

I hope are having a nice Sunday. It is FINALLY raining here and the mounds of snow are going away. A bit symbolic of how I feel about chemo....

JAB  

the last chemo is strange, but good strange.  They will have filled you with toxic drugs for the last time and then it's all about recovering and building anew future of feeling better than you have in months!

Finished the first big stretch of chemo and Herceptin. Stopped for 4 weeks to prepare for surgery. Surgery was on the 25th, now must wait 6 weeks for recovery before starting chemo again. I have fuzzy hair starting to grow in and my nails are growing in healthy again. Sucks that that will all come to a screeching halt when chemo starts again. I swear as the day is long, there will be a parrrrttteee when I get the very last chemo!

I had a wonderful time walking today. 

We were out for a good couple of hours. Had some delightful desserts in a French pastry shop and ate in a local restaurant. 

I believe that the weather really reflects how I feel about my chemo journey. It was definitely a brutally cold winter during which I went through chemo hell. Now the weather is turning warm and sunny and spring is finally here, I am finished with chemo and just like during spring it's going to be my time for renewal. 

Luckily, I don't feel like that dry clump of grass I posted earlier any more, even though I am still dealing with many of my SE's (e.g., joint/muscle/ bone pain, rash, bleeding, weakness, hot flashes, cold sweats, hands and feet sensitivity, indigestion, water retention, swelling, hair and taste loss, muscle twitching and cramping, heart racing, fatigue etc.). I finally decided to enjoy my day today no matter what!

Jab: Sorry you too have to deal rash. Wishing you good results from your biopsy next week. Which day do you go? 

Inks: Thanks for the feedback about the curcumin. That's something I want to ask my RO next week about.

Here is a pic from my walk today. 

Lisa- love the description of your town.  My town sounds similar except we have a Walmart and people discovered us in part and moved out here. I'm one of them.  You can't go anywhere without seeming people you know and I can hear both the church bells and cows from my house.  At our town Christmas parade they still have tables of free hot chocolate and cookies after the parade is done and the school children have finished singing carols.  I think living in a community like this had made it easier for me to deal with having cancer and recovering from the treatments.  I LOVE my town and plan to never live in a suburb again if I can help it.  The hot air balloons take off and land in our school parking lot and even after years of living here I'm not the only person who will stop what they are doing to watch.

Gosh, I get so behind in reading these- worn out already after a walk, church, lunch today.  And I am sleeping _{horribly thanks to my hot flashes too.  I do have a good blanket arrangement though, I have comforter piled in middle of bed and my sheet and comfy blanket on me which I can whip off and when I get cold can pull the comforter too, then whip them all off...etc...over and over..you all KNOW what I mean!  I read vitamin E helps with hot flashes just haven't started it as I'm already taking 6 vitamins from the MO/integrative medicine DR advice...I am waking up soaked as well and also have had a few throughout the day, nice.  Especially with the hot itchy wig on....}

_{And YES, the psychologist was a creep, and get this, he has a masters in Divinity as well, so speaks of God throughout...! That's blasphemous don't you all think?  I think I am sortof naïve as it takes me awhile to realize he was being creepy, but that last  time it was sortof obvious. - MEN!} 

_{Jab- I understand the rosy glasses of husbands too, mine acts like I'm a Victoria Secret model with my foobs and bald head...SO pleasantly endearing...I hope I would see him that sweetly if he were as changed as I  have been- I am NO VS model for sure!  I feel about 80 a lot these days and can't wait for this #%# hair to get to one inch!  Or even just to cover my whole head - NOT in patches...tired of looking like a freak!!!!!!}

_{It's getting warmer here in Texas and I planted flowers again yesterday with my beanie on...got so hot I thought my head was smoking and took off the hat..then had to time it as I was worried my scalp would burn as it's never seen the sun!  So back on with the hot hat!  GRRRRRRRrrrrrr....SOOO annoying!  I WANT HAIR!}

_{Amazon-  Hoping you recover FAST this time and I LOVED the Yew tree photo and info. - I vaguely recall reading about it when first assigned Taxotere and thinking it was good since it was 'natural'...maybe we will all live to 110 because of the YEW tree infusions?  tree of life...}

_{Lisa137-  My daughter is having a girl, naming her Hadley Gia- Hadley as my daughter is Haley and Gia for me as my name is Gina...can't wait!  My middle daughter has a almost 3 year old but she lives in Houston and we rarely see her as she is living with her aunt and not our daughter...sad...we miss her and are excited to have a grandchild so close to us that we will get to see often.} 

_{Pat- glad you are feeling better, the radiation sounds awful and must feel great to be done!} 

_{I am having swelling in the foobs still, not sure what it is from???  The PT is baffled and doesn't seem to be typical lymphedema...??  She has me wearing a jog bra every night to sleep in and my skin is irritated just from that!  Tired of problems ...want to be normal...}

_{I know you all know what I mean...}

Good advice, I think, wallymama. Everyone can rest assured though, that if I felt suicidal, even for one *moment*, I'd be running to get some help REALLY fast. I often comment on facebook that I am, despite the BC, "Still the happiest person I know," and I mean it. I love my life and my family and living in general. I just want to feel better, that's all, and that sort of weird depression is something I have (almost) no experience with. (I say almost because I did have severe post-partum depression 30 years ago.) Generally I don't get really depressed -- I get SAD, yes, and scared, and all that, but I can always find ways to pull myself out of it, through inspirational quotes, distracting myself with activities, or sometimes just giving myself a stern talking to, lol. This has been something different, and I personally do believe that it's most likely at least partly chemical in nature, whether due to hormones or drugs or some combination. 

Right now I'm merely irritated: I have to be awake to get ready to go to my last chemo in 4 and a half hours and I can't sleep because of the pre-chemo steroids and the fact that they are making me go PEE every half hour or so. Apparently I've been retaining water, and lots of it, haha, which would explain my crampy, squishy feeling thighs, I reckon. Oh well. I reckon I can sleep in the chemo chair....or the steroids will still have me wired enough that I won't care that I haven't had enough sleep. I have a strong suspicion that I'll still be peeing all day though -- just LOVE running back and forth to the bathroom pushing my IV pole. Sigh.

A *real* LOL at "at least I don't have to sit on my underarm."

Well thanks to the fact that my husband is on steroids (same ones I am!) at the moment too, for fluid in his ears, and therefore woke up at 5 in the morning, which made the dogs also get up, I'm apparently going to be running on no sleep at all today lol. But, thanks to the steroids, I'm also not especially sleepy at the moment, either, so maybe it'll be okay. Either way, last chemo. Yay!

lisa, wally: Thinking of you today. Praying for a good treatment and relaxed mood. 

Lisa: Your last one!!! Yay!!!

Jab: You will be in my thoughts on Wednesday. And hope that the warmer weather comes your way soon!

Smalls can be friendly in so many ways but if you weren't born there you'll likely always be an outsider to some degree.  I've been lucky but not being born and raised here does set you apart in some unspoken way.  It's ended up that my severest friends are all transplants from within the last 20 years. I miss the cultural perks of city life, especially museums.

We are home from my final chemo. I am done....well, with chemo anyway. Yay!

TL;DR (too long; didn't read) version: I'm done with chemo. Rads are next. Yay me!

Long, long I'm-on-steroids-and-typing-very-fast version:

Interesting day all around... .keeping in mind that at this point (and even now) it's been WELL over 24 hours since I've slept AT ALL, so I'm exhausted, but wired on steroids, and punchy and giddy...and drinking coffee at this point because by golly I wanted coffee.

For the first time ever when I went for my blood draw the lady was actually able to get blood from my port WITHOUT reclining me til I was about standing on my head and then having me turn my head all the way to the left. "Maw, we've got a gusher!" she exclaimed. She's awesome. Everyone there is awesome.

Dr. Rockstar actually saw us today--I had been expecting his NP, Allison, but we got the rockstar instead. He listened to my story about my sore feet and numb toes and fingers, and my problems with pain and said okay then, we're going to lower the taxotere dose back down again and add cytoxan back in, so hopefully this last round will be MUCH better. Bless him. He listened to my description of my weird depression feeling and said he hated to put me on antidepressants for something that might go away and stay away and suggested that I first try adding another klonopin in the middle of the day--he thinks it might actually be anxiety and I do not disagree with that at all, to be honest. So we're gonna give that a shot. 

We got the bloodwork done for my BRCA test. All my blood tests look good-- my hemoglobin even went UP for the first time, it's over 10 (barely) now, so no transfusion for me, yay! White blood counts looked good enough that he said we're gonna skip the Neulasta shot this time (which means my husband doesn't have to take another day off work tomorrow which is good,) and he just wants me to take Levaquin (sp?) for 6 days starting next Monday. He thinks that'll do the trick. 

Wrote me a prescription for more of the low dose hydrocodone that I really prefer to the oxycodone that knocks me on my butt even while it knocks out the pain. He also prescribed me something for water retention so that hopefully I can get rid of my crampy thighs and weird feeling butt-- I had gained 5 pounds in the 3 weeks since I was last there and I'm pretty sure I peed away at least 10 pounds last night. It's all water; I haven't been eating any differently than I had before--actually eating less. As I explained to him, I have had issues with edema before, but it was always in the summer, when I'd been on my feet a lot, and very hot. This time, I'd spent most of the time (because I was in pain or knocked out on oxy) in bed, and I've got one of those pillow top beds that sinks in at whatever point of you is heaviest....i'm sort of half-reclining most of the time, so gravity sends it straight to my butt and thighs instead of calves and ankles and feet. He found that logical. lol. (I'm getting ready to move myself to the other "spare" bedroom for the radiation period though. This bed is extraordinarily comfortable in the WINTER when it's COLD, but it's about to be spring and summer and I have hot flashes, and the bed does not "breathe" at all. It sleeps HOT unless you really move around from place to place in it to cool off.)

As we were leaving his office he gave me a HUGE hug and went on and on about how great I've done through this -- although personally I think I've been a whiny little you know what. Hilariously, my husband said "Don't I get a hug too?" and so Dr. Rockstar hugged my hubby as well and told him how awesome he'd been in supporting me and getting me through this--which is quite true. I wish all doctors were like this. I really do. I also got a big hug from his nurse practitioner--she's about as awesome as he is. Nurse Rockstar, I reckon.

Then it was off to the infusion room.

As we were waiting to be sent to our area and were seated in this line of chairs there was this one lady that broke our hearts. I want to say she was maybe my age, but I am notoriously bad at guessing ages. Very pretty lady. And she was crying and visibly shaking like a leaf and from what I gathered she was petrified and wanted to go to the hospital because she thought she was about to have a heart attack and die. I think that she was actually there for her first chemo and was having a major major panic attack, and all the nurses and several of the other patients hugged her and assured her that if she wanted to go to the hospital they would get her there, while some of them worked at telling her that it (chemo) wasn't going to be as bad as she thought.... She said, through her tears, "I want to LIVE." My husband and I BOTH cried, because we *remembered.* Oh, how we remembered. 

There was also an older fellow there who had apparently had some sort of mouth or tongue surgery and basically his entire head was swollen to the point that honestly I don't understand how he could see to walk, his eyes were so swollen, and he still had packing in his mouth  and yet there he was apparently receiving chemo, as well. I can't begin to imagine his misery, honestly and I felt ashamed that I'd ever complained about anything I've been through.

On the other hand: At my first chemo treatment there was a young girl there, maybe early 20's, and she was bald and had no eyebrows and she was pale and obviously in a bad place physically, but she still had that glow of the young about her; her spirit was so obviously intact that she was, my husband and I agreed, tragically beautiful. We saw her again today and her hair has grown back enough so you can tell it's dark brown and she has her eyebrows, and good color in her face, and she had a spring in her step and a smile on her face like she's never had a care in the world.

Finally we had our seat and I tried to instigate my original plan: recline, cover up with my fleecy blanket, put on my  headphones, set my iPod to "shuffle" and fall asleep listening to whatever the thing decided to play--and I've got over 6000 songs on that iPod, everything from my husbands metal, blues, and jazz stuff, to our common threads of bluegrass and classic country, my favorite 90s alternative stuff, his 70's hair band stuff, world music, music from certain computer games that I've fallen in love with, a surprising amount of classical stuff once it all was accumulated onto one device, tons of public domain "old time" string band, blues, and jazz,  and things like the Inkspots 50 greatest hits and the odd BeeGees song here and there-- I've got SOMETHING for everyone on my iPod and setting it to shuffle and letting it do its thing is one of my favorite past times.

Well, remembering the people we'd just seen, maybe y'all will understand that when the first song it chose to play for me was the Beatles "Let it Be," I had to grab some tissues, and cry a very emotional cry .... so sad for that one lady and for that man, so happy for that young girl, and so conflicted (but mostly happy) about myself and where I am.... and I think the message of the song really got through to me; I felt better by the end of it. 

The next song it chose to play was Tom Petty's "Don't You Come Around Here No More" which made me giggle, since it was my last chemo treatment. Of course I will be going round there some more for more appointments, but symbolically, it was perfect. 

The next song it chose to play was "Tubthumping." You know the one: "I get knocked down, but I get up again, and you're never gonna keep me down," and I started feeling stronger ....and getting a little weirded out by the messages being sent to me by my iPod lol.

The next one was a bluegrass gospel song called "The Old Crossroads," which is technically about choosing between Jesus and Satan, but I took it to mean, for me, today, to be about how I am now at a crossroads and can choose to live my life in fear of what might happen and hide out and wallow in that, or choose to enjoy each day as much as possible and do what I can for others and just be....good. In as many senses of the word as possible.

Most of the day was like that with the iPod, it just kept choosing songs that had a reason to have a special meaning for me -- like one was another bluegrass song--sort of but not really---a pretty song by the Seldom Scene called "Little Hands" that is about a baby and what he or she might grow up to be, and it made me think of the children (one of whom is my grandson) in my family and how life is like that; always some joy and renewal and hope if you just look for it, and usually not very far away. 

In any case, my plan to sleep thru the thing didn't work out. The music today demanded to be listened to and appreciated, it was like it was all planned out for me, and I think I also realized somewhere in there that one of the reasons for my anxiety/depression/whatever lately actually is that I'm a musician and I've had tv and the computer and my dogs and family and friends etc., in my life lately, but almost NO music. I need music. NEED. I won't let that happen again.

Near the end of my treatment, my favorite chemo nurse came to talk to me about radiation and warned me that "A lot of people will tell you that rads are no big deal, but you need to go into it understanding that it IS difficult, just in different ways than chemo, so that you don't get discouraged and disappointed early and get tempted to quit." I had already gotten that talk from my mom (who had radiation) but I seriously appreciated the fact that she was concerned about my well-being even after I wasn't under HER care anymore.

Have I mentioned how much I love this cancer center?

A little later I was given a lovely certificate of completion of chemo with my name printed on it and all the nurses had signed it...and I had to cry a little again. I'm actually going to miss them! 

A few minutes later Nurse Rockstar happened to walk through the infusion room and I remembered that I had not asked Dr. Rockstar when I could get my port out. I know that some have been told to keep it for one or two years because of risk of recurrence and since I'm stage IIIc.....  So my husband asked her and her answer was "Oh, she can get the port out whenever she wants to!" We were like wow! And I mentioned that I didn't expect that answer because I'd heard of some being told to wait because of that recurrence risk, and she just smiled and said "Yeah, we don't really tend to think in terms of those possibilities here. If you ever need another port, you can have another put in. As of right NOW, you don't need a port."  

I am over the moon about getting that port out ASAP. I'd go TOMORROW if that was a reasonable thing to do, but just having had chemo, I guess it isn't--- probably best to wait until after radiation, what do y'all think?

Then I was done, and got hugs from nearly all the nurses again,  and as we were leaving we passed by the office of the girl who does a lot of the billing and financial stuff. I don't know if I ever mentioned this here, but at the beginning of this year, when our insurance deductible became an issue again, she not only got us a "Neulasta card" that paid for all my Neulasta shots (I'm not sure how or where this really came from,) but she also applied for a grant to pay our entire, or nearly entire, insurance deductible for us....and THEN told us she'd done that. We didn't have to go in and ask about financial assistance or anything; they just somehow knew we probably needed it and took care of it. We didn't have to do ANYTHING. Again, have I mentioned how much I love these people?  So anyway, I asked HER to sign my certificate of completion of chemo too, because God knows that taking that financial burden off us sure helped my husband's stress level and therefor his health almost as much as their chemo drugs have (hopefully) helped me!  She's a rockstar, too. The whole place is just chock full of rockstars.

At 7 o'clock this evening we get a call from the cancer center--yet another rockstar, working on this at 7 in the evening, who wanted to know if we'd been given any paperwork today about the BRCA test. We had not. There were a couple of consent forms I needed to sign, and she needed some background information about my family history. So we zipped over to my husband's office, she faxed the papers to us there, we took care of it, and faxed them back again. I swear everyone there goes above and beyond the call of duty. I suspect most places would have let that get lost in the shuffle and then when it was too late would have told me I needed to come back and get the blood drawn again and do all the paperwork. Probably in a week or two...or I'd have had to call them to find out if results ever came in and would have found out that the test never went out. I guess I could be underestimating other places, but I don't think I am.

So, tomorrow I reckon I need to call up the Radiation people and set up my first appointment (really my second; I met what was to have been my original "team" there, but the surgeon and rads onc were the only ones I kept) --for 3 weeks from now, Dr. Rockstar said, and start rads 4 weeks from now, and he wants to see me again in 4 weeks also to see "how you're getting along," and to talk about what the results from BRCA test might mean--I want to get my ovaries out and go on femara, but might have no choice but to go the tamoxifen route until i'm *definitely* post-menopausal and not just chemo-pausal.

Dear God, I hope my periods don't come back....and if there is no other way I MIGHT pursue the chance that I can get insurance to pay to get my ovaries out based on the sheer fact that my periods are/were so painful that I was literally in bed for an entire week every month of my life since my mid 30's, in complete agony without Ibuprofen and Flexoril. They really are/were debilitating--that's a large part of why I work at home and am mostly a housewife; it's hard to get a job that doesn't mind if you take one week out of every month off.... Seems like reason enough for me. Plus the fact my mom had uterine cancer, and her paternal grandma died of either uterine or ovarian or cervical cancer--it was in the 1950's, so we really don't know for sure which it was. Maybe maybe.

So here's hoping that my depression/anxiety will disappear with a little more klonipin and a lot more music, that this round will be better and less painful due to the reduced taxotere dosage, that rads won't be too bad, that Levaquin will be enough to keep me from getting sick, and that I will eventually manage to actually sleep tonight... at least a little.

Hi Ladies,

Lisa - Your last chemo day sounds truly special, and you chemo team, a great bunck of folks. As I was reading your post, I thought that maybe what we all might lack through this is those activities (in your case music) that make our hearts sing and our souls full. For me its being out in nature, something that has been very difficult this winter. May we not ignore those things that make us human ever again (I'm saying that to myself more than anyone...)

Wally - Thanks for your thought re: group sessions. I have to think about it. If I'm honest, I think its that I'm not good with others emotions, particularily people that are really really emotional. I know this about myself so don't put myself in situations where there is going to be a a lot of it. Maybe thats a bad thing, I'm not sure...

Bec - Good question - I think I would pass on the trial. I agree with Lisa that it is a great opportunity, but honestly, I am tired and want to be well again. This is definately a question of 'to each his own' kind of responses.

Well, I saw my MO yesterday, and left  confused more than anything. I know I am done chemo and should feel relief, but I don't, not at all. It feels like I have a dark cloud still over me. I am still exhausted and swollen and sore. In the next month I have a CT, PET, Heart scan (not sure what that its..) a biopsy and my second breast comes of the first week of May. Also, my port doesn't come out until after radiation, for some unknown reason (which is the end of the summer) Perhaps I am just dreading all of this, but ultimately, I am left my MO's office yesterday feeling more down than up. Anyway, thanks for listening.

JAB

Bec - I would participate in the trail.  For me, not second guessing myself if it ever came back would be worth it.  Wishing you peace of mind in whatever you decide!

My home nurse came by today to pick up and close my file. Then I was packing away some unused home nursing supplies for PICC line care to be later picked up by the agency. It felt good to do that, because it gave me some sense of closure. In fact, my picc line site is almost healed and hardly noticeble, so I can now take a bath without covering my arm. What a relief not to have to deal with that any more! I feel liberated! 

lisa: I hope that you are doing well and YAY again for you to have finished chemo. It was interesting to read about your shuffle music selection and the songs that randomly popped up and how they all had a special significance to you at the moment. It's great to know that you have some 'rockstars' to look after you. I have to say that so far I met two great dr's on this journey: one was my BS who is excellent and thorough and now I really like my RO who doesn't mind calling me back the same day to answer all my questions, concerns over the phone. 

I too will have the BRCA test, but my MO thought that taking the ovaries out is over the top. Then again, I didn't really see eye to eye with her, so I am going to consult other DR's about it. 

Bec: Regarding the trial, that you mentioned. I'm not sure if I would sign up for something that would last a year with all those nasty SE. Yeah, I am going to do my own trial: drink chaga tea, take curcumin, MGN-3 plus vit. C daily, drink fresh juices and eat a healthy low callorie, low sodium, mosty vegie diet, and see what happens.

Inks: I aked my RO about the curcumin, and he said that he is familiar with it working on mice and in vitro, but couldn't recommend it due to a lack of in vivo double blinded studies. He said: you can take it, but it would be at your own risk. I said to him, that I am willing to take the risk. I am already taking L-glutamine during my chemo at my own risk. 

BTW: How did you find out about the emu oil? Where can one get it from?

Judy: I will be thinking of you tomorrow. I know it still sounds like a long, hard journey ahead at this point, but think of it in steps, as it may not seem so long. I don't know much about group therapies, but hey this forum is a great group therapy for me! I bet your head rash must be irritating as mine is driving me up the wall at times. I am developing a new rash site. This time on my knuckles!

Wally: Just one more to go. You can do it! And lucky you don't have to sit on your rash! )

Audra: That guy you mentioned is a total creep and should be reported as he needs to lose his licence so he can't prey on vulnerable victims any more. 

Lisa, congratulations on being done with chemo.  I hope the SEs  don't hit you too bad since dr lowered the dose. I did read your entire entry and enjoyed it very much.  Let it Be is my favorite song. 

Jab, you do have a lot ahead of you.  We will all be here for you. 

Audra good luck with your new MO.  You seem very happy, and I can't wait,to be like you. 

Bec, I don't know what I,would do about a trial.  I think I would not do it, but that is just me.  I am a worrier.

Amazon, it is kind of neat that your case manager comes to your house to close things out.  That would give me a sense of closure,that this thing is really over.

I am sorry if I am forgetting anyone or anything important.  I am sooo tired from working and radiation.  I need to get some sleep.  Good night ladies.