April 2013 Chemo Group

Right after the CAT scan on Friday, I was hit by a set of nasty GI symptoms. Spent the weekend chugging Vicodin, barely able to move. Monday morning, I felt a bit better, but noticed that the proto breast was hot (not the kind of hot you want when describing your breast) and bright red. End result: no chemo this week due to a raging infection of my TE. I think it is the curse of the second chemo (had to delay the second AC also). This time the BS says definitely no chemo for 2 weeks at least. The MO says maybe some Herceptin next week. 

And none of last week's tests came up with any explanation for the GI symptoms. 

Heather, best wishes for your daughter and for your surgery. For me, the worst part of surgery was waking up groggy and hurting, trying to figure out what was going on. Since then I've been working with guided imagery,(Peggy Huddleston's book, which I borrowed from the library) in prep for the upcoming thyroid surgery. Basically, it's creating a positive scenario that you can think about ahead of time. You can do this even if you only have a short time before surgery. She has a website at http://www.healfaster.com/ or PM me for more details.

I heard from a friend (and have read in books) that it can be a real shock to finish chemo, where you had a whole medical team scrutinizing your every move, to post chemo where they just say goodbye and good luck. My friend said that was when she started attending a support group, and was really glad she did, even though at first she didn't think it would help.

Indenial and anyone else PFC: how have your taste buds been recovering? I'm tired of eating food and wondering what's wrong with it!

Best wishes to all!

Virginger,so sorry to hear about your foot. I dont know how you can even walk on it. Did anyone say how long it will last. I hope it gets better soon.

I did have my first taxol and herceptin last Wednesday. It went well. Had no real side effects this week. But also went on vacation right after. My husband needed so badly. We had a great time. One day I did take a 4 hour nap.

Today is no. 2. I hope it goes as well. As for the bad taste in the mouth. I really hate it. Then some food sounds real good until I start to eat it. I rinse my mouth out a lot. It helps some. But I have the bad taste more then ever lately. Then my stomach just feels like crap a lot. But I think I still eat enough.

So if that the worst so far I can take it with no problem. It is a lot easier than ac so far.

I hope everyone has a great week with not much se. Plus hugs to all.

Had no.11 today. So now I'm down to 10!!!!!!!! Boy it great to have a count down. I really thought that I could taste the taxol as it was going in me. That was strange. The benadryl really did a number on me. Dizzy and sleepy more then ever. But starting to feel better.

It's kind of weird to be reading and getting caught up and it seems like so many of us are getting closer to the end of treatment.  We are just powering through it, aren't we!!!!  

I have my last (hopefully) taxol tx next week.  I had neoadjuvant chemo so meet with my BS early next week to start the surgery process.  I'm still not completely sure if I will do unilateral or bilateral mastectomy (not a candidate for lumpectomy or immediate reconstruction).  Got some weird results earlier this week.  Both my MO and BS had thought my BRCA results were negative.  Evidently my nurse manager was going through everything and in the fine print after going through several screens on the computer, it says that I'm BRCA 2+.  I feel the need to have it confirmed when I see the BS next week.  I already have a referral in to GYNONC for discussion on my ovaries.  The nurse made it sound like no big deal, just have the ovaries removed.  Ummm, not so the case.  Also, I need to know what this means as far as risk factor for my other breast.  I have an appt with a genetics counselor in a couple weeks, too.  

I was feeling like I was doing well with all of this, checking off each step of the process, but somehow hearing the BRCA2+ results has thrown me into a tailspin the past few days.  I think I'm starting to get it together.  Making my list of questions is putting my mind in order at least:)

Oh and I think it's GREAT how many of you seem to be getting out, date nights, vacations even while going through this.  I'm in AWE!!!!!

DaffyC, how hard to think you were BRCA negative, then find out it was a mistake and you are positive.  Makes me want to look through my BRCA results again!!! You'd think if someone was positive, they would make it VERY obvious on the report, not obscure and hard to find. Maybe it's a good thing that Myriad lost their exclusive rights to do the test, if they can't even write a clear result on their reports. 

Molinda, congrats on the clean path report, and sympathy for 5 days in the hospital. It would be my worst nightmare.

Looks like I am heading for more surgery tomorrow. My implant infection is not responding to the antibiotics, so they are taking it out. I'm a bit confused about exactly what they are doing, as I haven't spoken to the PS yet, just his nurse. Very frustrating to have so many complications to the complications. I just want it to be OVER!

Chemogate 7/13/13 (Oh! Unlucky number!!!)

Previously on Chemogate:  Pamela Kay was sent on a round of testing by the anxious Dr. J in an attempt to explain our gastrointestinally-challenged heroine’s mysterious abdominal pain. What new miseries will be revealed by the results?

As promised, our Pamela Kay has arrived for her CAT scan on a lovely Friday morning. After a tasty treat of vanilla-flavored barium drink, our heroine is amazed at the ease of having a CAT scan and warmed with the thrill of being infused with iodine tracers.  Two hours later, she finds herself in bed, unable to accomplish more than a few hasty visits to the bathroom, a situation that continues until Monday morning, when she wakes up feeling a bit more normal.

As our heroine showers, she reflects on the shape of the proto-breast, especially in comparison to her natural breast. If they were headlights, she muses, the natural breast would be lighting the asphalt and bushes at the side of the road. In contrast, the proto-breast would be shining somewhere in the trees above.  And, rather than having the contours of a gently rolling hill, the natural breast is vaguely reminiscent of a somewhat sagging ski jump, perhaps one even an experienced Olympian jumper would think twice about trying, and the rather irregularly-sculpted proto-breast could be better characterized by an ice-covered mogul carved and shaped by herds of hot-shot skiers as they bounce down the steep mountainside. Dr. D has indicated that the next fill will likely be the last. Our heroine had hoped that by this point, the proto-breast would have some resemblance to an actual body part that might have naturally occurred. She finds it hard to imagine how the icy mogul will be transformed into a gently sloping ski jump by the simple removal of the tissue expander and substitution of the promised permanent implant.

Stepping out of the shower, Pamela Kay glances in the mirror for a last comparison, where she spies a rather disturbing development: half the proto-breast is now a rather unnatural blotchy red and purple color, which sends our multi-colored heroine dashing for the phone to call Dr. D. Two hours later at his office, Dr. D confirms Pamela Kay’s concern: this is definitely an infected implant.  Antibiotics and rest are ordered.

But first, our heroine must visit Dr. J for the revelation of last week’s test results, which, naturally, explain nothing of the origins of the mysterious abdominal issues. But those were last week’s symptoms; after some strategizing to plan for next week’s chemo approach, Pamela Kay brings up another nagging concern: the cough she has had for the last two months just isn’t going away, and would Dr. J mind if she treated it homeopathically? Suddenly, the alarms are going off, and Dr. J is demanding another CAT scan. Loath to undergo another thrill-filled barium and iodine experience, our unenlightened heroine questions what in the world Dr. J thinks she will uncover?

After listening to Dr. J’s somewhat convoluted discourse on needing to check on any cough, no matter how minor, that had lasted two months, the light finally dawns and Pamela Kay finally understands what all the CAT scan fuss is about, in spite of Dr. J’s odd refusal to say the actual word. Apparently, Pamela Kay’s determination to put the matter out of her mind has blinded her to this suddenly obvious connection between the ordering of multiple CAT scans and the reporting of what she had considered to be simply chemo side effects: the dreaded metastasis!

At this point, we can understand how the reader may be somewhat reluctant to believe that, after so much fuss about her back pain, somehow our oblivious heroine had not made this connection, but, we beg the reader to consider the depths of misery our heroine’s life had taken her; depths where even metastasis was only a vague, half-forgotten shadow. Even our heroine is stunned by just how oblivious she had been. It is true. The side effects of chemo are so horrible they can make you forget the reason you are having chemo in the first place!

But, for now, our heroine has only one goal: ridding the body of infection and getting back on track with the chemo. Knowing that the last thing she needs right now is more tests, Pamela Kay convinces Dr. J to put off the CAT scan. What she needs first is rest, and rest she does.

Pamela Kay rests harder than she has ever rested in her life. She rests and takes pills, then takes more pills and rests. In between, she makes many checks on the proto-breast and reports to Dr. D’s nurse. The reports aren’t going well. Maybe some parts are less red, but some are more red. At Nurse Baneful’s request, Pamela Kay outlines the red area on the proto-breast with a marker in hopes of seeing a reduction.  But by Thursday, it is clear that, even though the top corner has turned less red, not enough progress is being made, and Nurse Baneful delivers the sad news: the implant must go!

Our feverish heroine once again contemplates the proto-breast, now more reminiscent of a misshapen  strawberry muffin hot out of the oven than an icy mogul, and wonders what will become of it, and if there is still any hope for any kind of a ski jump whatsoever?

On Friday, the deed is done, and on Saturday, all that is left for our un-implanted heroine to do is contemplate how something that has taken three long, laborious, months to slowly inflate could be so quickly deflated. The lumpy balloon, once hard and filled to capacity, now punctured, is empty and shriveled.  No longer even a misshapen muffin, but a Halloween Jack-o-Lantern left to shrivel and cave in on the porch until Thanksgiving, rows of stitching on the bottom indicating the remains of a toothy carved mouth.  

As our heroine bemoans the loss of her once-disdained but now mourned-for carved, icy mogul, she realizes that she must think of the future. Dr. D has said that chemo must go on, and next week is not too soon. Once again, however, Dr. J is reluctant, and has announced that next week is much too soon. Pamela Kay takes a deep breath and prepares for battle. Armed with Dr. D’s ammo, Pamela Kay sets her sights squarely on Dr. J, determined that no matter what, chemo will happen next week!

Next week on Chemogate:  With both Dr. D and Pamela Kay ready to shoot her down, will Dr. J be able to halt the chemo train before it takes them over the cliff of Massive Infection? Has the train already gone over the cliff? What are the proto-breast's prospects for reconstruction? Have they faded like the sun over the gently rolling hills? Find out in the next episode of Chemogate!

Patty, Yes I did consider DIEP, but felt I wasn't a candidate for several reasons. Maybe if reconstruction fails completely, I will consider it when I am healthy again. 

PamelaKay,



I'm so terribly sorry for your set back. I know they are frustrating to say the least. But let me share with you some details of my past 2 weeks. If nothing else, you will laugh in disbelief so read when you are good and drugged up...lol.



Sx day BS walks in and asks is everyone on speaking terms as I had walked out on DH on friday before sx. Answer was somewhat yes but comical to say the least as my bff held my hand and he sat pouting in a chair in the corner. (I SWEAR I HAVE 4 KIDS INSTEAD OF 3). SX went well per both BS & PS. Pain completely out of control (I usually have a very high tolerance...but not this time). That being said, I was on a phentinol epidural drip until thursday, valium every 8 hrs, Percocet every 4 horus, Norco every 4 hrs, torodal every 6 hrs, antibiotics, colace and ambien at night to sleep. Through pain got 3 hrs sleep, 1st night, 5 hrs, 2nd night and about 4 the restmof my time there. Both BS and one of my day Nurses were losing sleep trying to figure out how to get me to a consistant 5-6 level of pain. 5 days of hell, finally being sent home with a consistent level 7 which was a cakewalk compared to what levels I was actually feeling. Get home, get off med track and hit a level 12 because DH fell asleep and forgot a dose of my meds. Out of control wanting to run for the hills, my friend came to the house doubled up on meds and basically knocked me out and told DH to text her every time he gave me meds to hold him accountable to keeping me on track. Day 2 stayed at a 6-7 yay for small miracles. Day 3 daughter got me back on track getting me to a steady 3-5 pain level. Day 4 son missed a dose getting me off track yet again. He left in am with daughter to take her to work to which i woke up to nobody around me. DH in back bedroom with dead cell phone asleep unable to hear my cries, I finally crawled my way back throught hte hous to get his attention, needless to say completely out of control and off of the pain charts again. Also on Day 4 my grandfather had emergency heart sx and I was a wreck not being aloud to go see him, Day 5 told them if they did not take me to see him I would hitchhike if they didn't take me to see him. BFF did that evening and all was well as he was in ICU and we had to take turns being with him so I was able to sit a lot and rest. Then right before we left for the night, I had to go to the restroom, nephew wanted bff to help me to which I replied that I was capable of peeing on my own. Well apparently I was wrong I was able to pee but did not realize that I had to walk on water on which I slipped grabbed the sink with my right arm (side missing the 13 nodes) thought I pulled out right drain because of pain I could not stand up, writhing in pain, I yelled for help and was put in wheelchair, brought to the car knocked out again at home. Day 6, I got news that a very dear friend of ours dies from a heart attack 42 yrs old became very upset and began to have uncontrollable spasms to which my DH called Dr who did not respond quickly enough to his liking, called mynbff and then the EMT's. Dr. Called back, EMT's showed up followed by bff (what a fiasco to say the least) Dr said double dose my valium to get mynpain under control or my implants would have to be removed (like hell), EMT's said drains looked agitated but fine would take me in if wanted to go, Dr said save time & $ and concentrate on relaxing basically passed out and awoke calmer and more relaxed. My bff said she was now just saying everything is ok and I'm doing fine because everyone was starting to think she was making all of this crap up... every bit of it is the gods honest truth. I am just now able to look back at it all and see to huge comedy of errors that my life has become. Two awesome things have since happened...the red cross flew in my son whose in the Navy which was some of the best medicine I could have been given and my sister-in-law flew in to take care of me which she has done without a hitch keeping me at a 2-3 pain level and even helping me to cut back on some of the narcotics so I can actually enjoy my family and friends...

Moral of the story...relax and stay ahead of the pain if you can and go with the flow. In the grand scheme of things, it will all work out in the end hopefully sooner than later. God is faithful and although he does not promise a trial free life/recovery, he does promise that he will be right there with us through them.



Praying for healing and infection free as quickly and as miraculously as possible.



Hugs and love to all!

Melinda

Melinda, my hearty sympathy for the terrible week! I hope writing it all down helped process some of your emotions.



That's basically what I am doing when I write Chemogate. Condensing what happened to its essence and putting it through a comic lens helps me work through the trauma, as does being able to laugh at myself and my situation. Laughter is one of the best tools we have in this battle.



That's why I'm so grateful for BC.org and this April Chemo Group. Without you all I doubt I would be writing Chemogate, and doing so has helped me tremendously. Many thanks to everyone on this thread for your support and encouraging words.

Pamela Kay,



I wish that chemogate was fiction and not the means by which you process this crap! We love your wit and we love you. Healing hugs to you.



Sandra

I am looking at it very similarly to PamelaKay.

If you can't get it out, process it,laugh and move forward, you have to cry and crying just jacks up my sinuses, makes my eyes puffy, and gives me a huge headache and with all of the aches & pains I already have, I figure why not laugh its a lot healthier! Love to all! Molomral?

Pamela and Melinda the two most amazing people I know. You are the best and thank you for your storys I just wish they were fairy tales and not real.

Had my taxol and herceptin today.3rd and 9 to go! Steroid kicking in. Alway good for three days then down hill . But not bad at all so far. But just dont piss me off. The kids in pizza shop now know what it is like to piss me off! I really need to try to get in there more often. Maybe I will be able to talk to dh about that. They seem to walk on him and they would never do that to me. So if I show my face more it will ru better and give my husband more help. He just does so much!

Sorry I had to get that off my chest. So I really hope everyone is doing the best they can!!!! And keep laughing as much as we can! Cry when we need to also! Love you all and never stop thinking of all of you.

Good evening ladies.  I have been trying to catch up with this thread as I have been so busy at work lately.  Seems all I have time for is work, sleep a few hours, take pills, go get poisened every other week, repeat.  I finished my (hopefully) last chemo today.  One step down.  It looks like I'm not the only one anxious about upcoming bmx.  It's all I think about right now day and night, well that and my jacked up reconstruction options.  I also see I am not the only one craving more info out of dr appts these days.  I am thinking, hey - I'm getting close to the next step, can you tell me something please!  and they are all, your blood work looks great, see you next time.  Very frustrating.  Maybe they will wait until I'm on the op table to anwer all my questions and tell me what happens next!  So glad so many of you are nearing the finish line.  hugs!

Heather,

I am so sorry that you will experience a delay in your reconstruction, but you and your doctors are in cancer-killing mode right now.  The reconstruction will come! I will be thinking about you, especially on Monday and praying that you have a smooth and painless surgery and recovery. You will do great.  You are a fighter and someone I am honored to know.  My only advice is to ask for help.  We all need to learn to do that.

Hugs,

Sandra

Heather, I'm glad you're moving on to the next phase of treatment, but sorry to hear your reconstruction will be delayed!! I decided to skip reconstruction altogether & am very happy with my decision... but it's not a decision I would have wanted made for me. I did want to invite you to join the Flat & Fabulous page on Facebook if you'd like (you too, Pamela)... many of us have chosen to stay flat permanently, but others are just "temporarily flat" while awaiting reconstruction. Good place to get fashion ideas, support, advice on prosthetics if you decide to go that route, etc.

I will be thinking of you & hope your surgery goes smoothly! Lots of love