Posted on 11/11/2010 1:23:03 PM PST by janereinheimer
Chemo yesterday was a little rocky. Not because of me, but rather unforseen problems. I knew when the the EMT's came thru the waiting room with a stretcher we were in for delays. I never did find out what the issue was, but they were quick to tell us it wasn't a patient but rather a family member. OK. I hope it wasn't too serious, despite the dramatic exit! That set us back nearly 2 hours. : ( I was hoping to be home by 4, instead I was just getting my chemo! A long day indeed! But now I have a sumptious feast to enjoy at my neices, so life is good.
Thank the Lord the EMTs weren’t coming for you. That would have been too much if they’d come running in, then stopped in front of you.
Delays are horrible. Even under the best of conditions, two hours just sitting would be difficult for me. I’ll have to follow your lead, Jilly, and take my laptop.
Hang in there, Lady Jilly, and I pray that the days ahead won’t be too horrible.
Jane
It turns out that I am not estrogen positive after all. What that means, among other things, is that I probably won’t need any estrogen inhibitors.
The results from the molecular study of the cancer cells are being re-run and I go back to the oncologist for a final update this Friday. By that time, I should have a report that either confirms the first finding or one that points us in a different direction.
The oncologist is recommending a regimen of 4 cycles of chemotherapy, followed by radiation. That’s an aggressive treatment plan, owing to the suspicion that it’s always possible that some marauding cancer cells could have disguised themselves and are lurking in shadows somewhere in my body. The chemo will take care of them and zap them right out of existence. Cancer cells are good at playing those kinds of games but I definitely do not want my body being the host of a masquerade party. I’ll take an aggressive treatment plan any day. I’m sure it’s one of the reasons why the survival rate for breast cancer is increasingly higher and higher.
My big excitement of today was going back to my primary care physician for a pneumonia shot after Quint and I met with the oncologist. Can’t be too careful. And they’re supposed to be good for ten years. So let’s see, I had my flu vaccine when Quint and I were at the doctor’s last Friday. I hurried and got a shingles vaccine last year when Quint got shingles. That’s very painful so I definitely wanted no part of that.
I’m on hold until Friday, after which appointment I will probably get scheduled for the chemotherapy, starting sometime during the first week of December, then a three week wait, then another cycle of chemo, etc. etc. It will take 12 weeks to get through the four cycles of chemo.
I’m finally getting used to saying “me” and “chemotherapy” and “cancer” in the same sentence. Guess that’s an improvement.
My peace comes from knowing that the number of days of my life were determined by God before I was even born. So worrying about how long I’ll live is not going to add one minute to my life.
Besides, I have things planned since I’m now President of the Effingham/Shelby County Lutheran Women’s Missionary League. Things like, oh, I don’t know. I’m already starting to go around to the different Ladies Aid groups to meet other women in the Zone and am enjoying all of them tremendously. I thank God for all my friends at church. They are such a comfort as they pray for me and help me keep my chin up.
They are so genuine and loving and I thank God for bringing each and every one into my life.
I mean it.
— Jane Reinheimer
Thank you jane for that report...I was just about to ping you to ask how it went and ta-dah, there was your post!
I’ve pinged bunches to this post...she’s probably back from holiday by now.
4 rounds of chemo...well that’s easier than mine...of 6. You have a great attitude, you’ll do fine. Plus you have a great support system already in place-your hubby and the church ladies (lol). My church has really rallied around me, it’s times like this that you truly can feel the love that normally one might take for granted.
Congrats on becoming prez of the Missionary group! Cool. Hopefully the chemo won’t slow you down too much...once you get an idea on how it does affect you, then you can better schedule things. Like f’instance, I know I will be worthless by about day 4 after chemo and for about 3 to 4 days after wards (which was why I was slow to check on this thread! I flat on my back in bed-weak as kitten-which, come to think about it, that is a bad metaphor, since I’ve seen lil’ kittens race up trees with ease!LOL)
Good that you got all your shots before chemo! Nobody even suggested it for me, so now I add that to my paranoia, seeing how this IS the season for all kinds of cooties in the air. I swear, I’ll probably become really OCD about germs after all this!
My onc. was initially concerned about my cancer creeping off to other places, too, after one of my scans looked “suspicious” but subsequent scans looked better and so far, so good. It is so distressing to even think of it going elsewhere and setting up shop.
Have they told you what yummy chemo-cocktail you’ll be on? Right now I’m on A/C.
That’s adrimyacin (sic.)-nicknamed Red Devil- and cytotoxan. Just the name, cytotoxan is enough to creep you out and is very self explanatory! Red Devil, I’m finding is not that bad, so far. That one the nurse has to manually inject, instead of IV drip-comes in big syringes...yikes! And it will turn your urine bright red for a couple of bathroom visits afterwards! That can be alarming if you’re not prepared for it.
Oh boy...here I go again, just rambling on. I wish you well today at the docs. Let us know what all you find out!
I’m going to take Taxotere and Cytoxan. They don’t even sound good.
I’ll be meeting with the onc. in about a half hour. Have a list of questions ready for him.
Missed hearing from you but understand completely how the weakness and fatigue can zap you out.
Please know that you are in our daily prayers. We’ll get through this. My prayer for both of us.
Hope I don’t have to take Prednisone. Don’t like those side effects at all.
Have you had any trouble with insomnia? Or bouts of mania?
If they kick in as side effects for me, I may have to ask for some Valium for Quint. (just kidding)
He suffered through thyroid storms with me in the 80s before I had my thyroid ablated. I gained 40 pounds which I am still trying to take off so weight gain wouldn’t be welcomed at all.
Will post more later when I get back from the doctor.
And now for an update. Quint and I met with oncologist today.
Next Friday is day for first cycle of chemo scheduled. I will take two different chemicals: Taxotere and Cytoxan. I read about them today before going to my appointment. They are mean. Vile. Not user friendly for patients. On the day before the chemo appointment, I have to take two tablets of Dexamethasone and also two on the day of chemo. The Dexa.... is supposed to reduce side effects of the Cytoxan. That will be the first of four.
One thing at a time. The Oncogene Dx came back on the re-test and showed a very, very slight positive showing of estrogen. So I’ll also do an estrogen suppressant for five years. That, added to the radiation which will start after the chemo is done, will make the odds of recurrence about next to nothing.
Those are good odds. Maybe I should buy a lottery ticket. ha ha
Quint got the streaming device hooked up this afternoon so we can watch Netflix movies and programs on our television. We enjoy watching History channel documentaries, BBC mysteries, and other PBS documentaries. That will be for those days when I feel really blah. About four days, I’m told.
Wow, sounds like you a got a ticket for the same bus I’ll be on!
Taxotere is the stuff I’ll be getting for the last 3 rounds, a very intensive concoction. And I’ll be on the 5 yr. plan with the Taxol after radiation, too.
The dexamethasone is some funny stuff, girl, on one hand it’s liable to wire you to the gills, and yet, make you eat like a horse. My onc. nurse told me I could actually GAIN weight during cancer treatment!! (so much for bikini season, *sigh* lol) My appetite hasn’t really decreased at all so far.
The one good thing is that it will tamp down the pukey feeling real well. But you will crash after you stop taking it and that’s when the flu-y symptoms begin and just laying in bed sounds like a good idea. You will be doing A LOT of TV watching on those days. : ) I tried reading in bed, and maybe it’s the chemo, but I can’t seem to focus like I used to. And I used to love to read! Your Netflix subscription will be getting a workout during chemo. (ours is!)
Next friday?? Did you get a port? Or will you be real soon?
Oncologist says he thinks I’ll get through four chemo cycles without a port.
I’ll be taking Dexamethasone (two a day the day before chemo and two the day of).
I can’t tell you how much I appreciate your sharing your experiences with me.
It’s almost like you’re an Indian scout out there leading the way. Just a couple of weeks ahead of me.
Blessings and prayers,
Jane Reinheimer
Hi everyone:
I’m back!
My vacation to Florida was wonderful - visiting with mom and dad in law, sister and brothers in law, niece, new great nephew and my stepson and his wife. Wonderful, kind people all of them.
We spent a week in Key West. I could not be as active as other trips we have taken there because my stamina isn’t what it used to be. But I am still doing better than the immediate months following the last of the chemo treatments where I received three chemo drugs. The last treatment for all three was May 9th. Now I am only on Herceptin and am doing fine.
I had to take the “pre-meds” consisting of steroids, anti-nausea and allergy medicine during the months I took the three chemo drugs. Now I only get Benedryl before the chemo. (I call the Benedryl “Sleepy-Time-Down-South medicine”, because I fall asleep within five minutes of it entering the port in my chest). I gained 40-50 pounds during the months from Jan. to May, but it is slowly coming off.
They now have me on Femara, an anti-hormone pill for five years. I first took Arimidex, another anti-hormone pill and got a rash from that so they switched my to Femara.
I am doing fine on it.
My reconstructive surgery, phase one, scheduled for Dec. 16th may have to be postponed. My hemocrit (hemoglubin) count is low. I am taking iron supplements now and have to raise my count to “36” before they will consent to surgery. I also read up on iron-rich foods, which include liver (yuck), chicken, fish, berries, nuts and grains and egg yolks.
If I am not able to get a better hemocrit reading I have to wait for next year to have the surgery. Hubby said don’t worry - whenever I am able to start the 6-to-8-month regimen is fine with him. The regimen includes (1) the insertion of the expandor complete with drain tubes(painful they say), then the 5 - 6 injections into the expandor to expand the skin, then when that has been successfully done, they do the insertion of the implant, recovery and then they start on the other breast to balance everything out. Oh joy.
Getting back to the chemo stuff, I was on Taxotere, Carboplatin and Herceptin from January to May of this year, now I only get Herceptin. On these drugs, I really didn’t get nauseous at all, just very tried, some constipation, heartburn, other minor aches and pains. I also got a port installed on January 28 of this year and did just fine with that. The chemo drug or drugs is injected into the port which saves having to have the IV each time.
After each chemo treatment I wasn’t as sick as I thought or was told I would be. You are, of course, very very sleepy but my appetite was fine. I only had to watch what I ate, no spicy foods or rich foods - I kind of ate like a baby (!) puddings, applesauce, lean meats, some veggies - the ones easier to digest and so on. I did find that coffee and some colas added acid to my system so I tried to stick to weak tea (not herbal).
As I was recovering and the digestion was better I added lots and lots of water, tried not to eat after 5:00 p.m. or between meals and eventually lost 20 pounds. It is a continuous battle because during the chemo you are weak and cannot exercise and during radiation the same.
Movie watching is a GREAT way to rest, be entertained (even educated, depending on the movie or series) and to forget about the cancer. Comedies are great but I personally liked love stories and historical movies.
One day I was asked how I could sit and watch movies all day by a rude relative and I replied “IT HELPS ME FORGET ABOUT THE CANCER!” (what a jerk!). Another asked (immediately after I got my mastectomy and was wheeled into recovery) did I think my smoking caused my cancer and then just recently I was asked when did I think I was going back to work, as if I had been loafing all these months.
I tried not to take advantage of anyone during recovery, even during the first few months of cancer treatment. I at least did the best I could to clean my house and do basic housekeeping, even if I wasn’t feeling that great.
I found over and over again during the last year that if you have not been through this you cannot understand what we go through. You find out who is your friend and who is not. Some relatives were horribly insensitive and asked rude questions or just ignored me, yet almost complete strangers (the wife of my husband’s co-worker) called me every other day. It was quite an education.
Anyway, I thank God for my recovery, I thank my new friends here and I pray for all of you. Hang in there and only, repeat only, associate with positive people during your recovery. Tell anyone negative, or rude or hateful to....well....you get the idea!
“General Bunches”, here (rallying the troops!)
Click on a forum topic that interests you.
Tip: lots of liberals on here, so be warned. Some threads can get political, but most stay with the subject of cancer.
Quite a lot of interest in alternative treatments here Forum: Alternative, Complementary & Holistic Treatment
Wow, I didn’t even think they did chemo via regular IV any more. Guess 4 rounds or less is the line, maybe.
You’ll get to avoid the hassles that come when the port get ‘clogged’. That happened to me last time. We were already running way late and then that! My immune system is still too robust, I guess and it attacked the port and clogged up the opening of the catheter with “fibrin”-I guess the goo of white blood cells- I dunno. Anyway, they tried all manner of things to get me ‘unclogged’ and it still took over 40 minutes! Heprin flushes, ATP flushes, walking while swinging my arms vigorously, etc, it was crazy. They said I was clogged up more so than the usual patient. Great.
I wonder if it’s gonna be that way all the time!?
This will work both ways, jane, you’re starting the hard stuff right off the bat, I’m still 2 rounds away from that, so you can tell me just how rough(or not) it was on you!
I’m more anxious about that stuff than the whole idea of chemo in the first place. Funny what we work ourselves up over. But, yes, you do have the right attitude that I have to also remind myself of constantly, that He already knows our ‘use by date’ and that it shouldn’t worry us none.
I’m just hoping He ain’t in no big hurry to see me! LOL
Hey, bunch!! Welcome back!
Wow, sitting here with 18 degrees outside, Florida sounds like it would have been wonderful! : ) Heck, anywhere above freezing would be nice!!
LOL about the stupid rude folks and family members! I so hear that. Man, you just don’t realize how full the world is of STUPID until something like this happens! I’ve come >thisclose< to just completely going off on some of these jackwagons and the jawdroppingly awesome stupendously i’gnert things they say to me.
Wow, reconstruction sounds pretty intense. I can understand why you want to do it. I’m torn, in my case. My relatives are urging me to...but why? Just so’s they won’t be uncomfortable if I show up without my fake boobie in place?
I have no husband any more, and certainly no prospects (or desire) for another, so why bother? I’m totally ok so far losing the thing and doing without. But if the ol’ man was still around, I most certainly would have it done.
Oh, hey, another thing, bunches...were your emotions all over the place on chemo? Maybe it’s the “instant menopause” thing they warned me about, but I cry at the drop of a hat now!
Welcome back, bunches!
Glad you had a good trip to Florida. Especially since it’s 16 degrees here where we are.
But weather is the least of our concerns at this stage in our treatment, right?
Hopefully we’ll be welcoming a new “member” here shortly — Laura. She’s ahead of where we are since we’re still “newbies.” Laura has passed her five years so maybe she can add something to our information base. Am sending her the link today.
Also, thanks for the links to the other sites. Gonna take a look just to see what they got going.
Jane Reinheimer
Jilly:
Thanks for your response about the “jackwagons” being everywhere. It’s hard to believe how people act sometimes. We cancer patients, however, do have compassion for other cancer patients. I find there is an abundance of it in myself. You know how the “newbies” feel when they first hear they have cancer, you sympathize with those just starting chemo and radiation and you admire the “long-timers” who are near to reaching their five year mark of no cancer.
I’ll tell you the truth, with my basic rebellious nature, I was at first really angry about having cancer. When I first heard the diagnosis, I was alone, I basically said to the doctor “Oh Sh....t”, but I didn’t cry. When my husband came home from his business trip the next day I allowed myself to finally cry. I was not scared I figured if it is my time so be it. I WAS surprised, however, by the outpouring of support from people I hardly knew.
My real anger, which I am still processing, is with the jackwagons. I told hubby when I was in the middle of chemo, etc. that I am going to say whatever I want now to those people. I am still working on that because it is my nature to be a people-pleaser, a go-along-to-get-along type and an appeaser. Fighting cancer is not the time to be that way. You have to concentrate on yourself, for a change!
Crying at the drop of hat, whether it’s because of the chemicals injected into you, the situation you are in, whatever, releases pent up fear, anger, resentment and all the other emotions that should not be stored up during your battle with cancer. Let ‘er rip, because storing up those emotions is bad for you. If you cry, for instance, in the middle of a restaurant, just tell the waitress the food is so AWFUL it makes you cry! Just kiddin.
I called my hated cancer tumor “Black Bart” because I saw the darn thing on the ultrasound and it was kinda ominous and scary looking. I was determined to kill the darn thing and I think I did.
This thread is ideal for all of us. What a wonderful idea to have it for all of us to vent, ask questions, compare notes since we all have an understanding of what it is like to fight cancer.
The jackwagons and insensitive “stupid-ohs” we are encountering, whether a relative or not, are to me excess baggage which I don’t need. There are so many other kind people you will meet during your fight with cancer-it is amazing!
If my hemocrit reading, or hemoglubin reading, which is the red blood cell count, remains low then I’ll tackle the reconstruction stuff next year. For now I’ll just walk lopsided with the right side of my chest much larger than the left! Leaning right is better than leaning left!
Tip for all: Don’t wear a white bra with a sorta filmy blouse. I forgot about that on vacation and the picture taken of me in that outfit is hilarious. Talk about being “unbalanced”.
Gotta laugh at this stuff-there is humor possible in our situation, just kind of a dark humor.
Take care.
“Lopsided Bunches”
Hey bunches:
Hang onto your sense of humor. Mine runs a bit “dark” too sometimes. It’s one of the ways we’ll get through this.
Together.
Breast cancer brings a bunch of us together in a giant sisterhood.
Jane
Yesterday I got a wig.
I wasn’t planning on it, initially had proclaimed that I wasn’t going that route, was totally ok being “fuzzy wuzzy” and yet...there I was, toting a little bag of fake hair home, compliments of ACS.
I had attended their class they have, “Look Good, Feel Better”, at our cancer center. I admit, I went for the goodies-you get makeup and stuff to take home, donated by well known cosmetic companies-but I also got some great tech tips about scarves and a cool way to use old T-shirts to make an easy turban. (which I immediately tried as soon as I got home!) They finished with a talk about wigs, how to chose one, care of, etc. It was a good class...I would recommend it.
Anyway, my neighbor and friend was with me, since my car is being stupid(again!), she was my ride but she sat in with the class. As we were leaving she said why don’t we stop at the ACS wig shop on our way out? Oh...I dunno...I said, I wasn’t too hip on the notion. She kept at me like a kid wanting a cookie. Oh alright! but just for a minute.
Most of the wigs on display were most definitely not my type or color, and my friend kept pointing out ones for me that were absolutely geriatric! Jeez! My mom wore her hair like that! Are you insane?
Finally, the little lady volunteer pulled a couple of wigs out of a drawer that were close to my color and much more contemporary. The first one I tried was ‘eh’ and didn’t look good at all...too ‘wiggy’ looking. But then...
I tried the other one, the volunteer helped with getting it adjusted right and brushed the bangs out of my eyes and fussed with the back some and when I got a good look at myself I couldn’t believe it. That was “me”. Me when I had hair. The style was so dang close to what I had had and the color was near spot on. I began to cry. It was an odd sensation. On one hand I was elated at how good I looked, but on the other sad at the fact that it was a wig and not really “me”. The past (how I was before cancer) and future (after cancer when my hair comes back) melded together with no place for the hairless present at that moment. I could have never imagined how emotional it would be, just the simple act of trying on a wig but it was. All the other gals in the wig shop were ooohing and ahhhing at how great that thing looked on my head. My friend kept saying ‘Wow! That’s the gal I knew! It looks just like your old hair!’
The volunteer hugged me as I sobbed like a big ol’ dummy on her arm. The next thing I knew I was leaving there with that wig in a bag.
I have no idea if I will use it that much. I have such mixed feelings about it right now. I love how it looks on me, but at the same time I feel slight guilt about it. It’s weird. One of my friends-an 8 yr. survivor-said she only used hers on Sundays to church. LOL, maybe that’ll be my plan. Although we do have the school Christmas concert coming up...
It’ll take some getting used to, that’s for sure!
LOL! Photoshop the phrase "This space for rent" over the area in question.
; )
You know, I'm not really angry at anyone or anything about this. I'm trying to see the lessons in this and I had prayed that God would allow me to show others His love thru this situation and I admit I have had a odd kind of joy now thru all this so far. The pinheads do annoy me, but I try to tell myself they can't help it, they're just stupid. LOL. At times I wonder if it's worth the energy to go off on 'em or to try and set them straight with facts, but I think they're kinda like hard core Obama voters-you can't change their minds or help them, they have to come to the realization on their own...if ever. : )
Hey, hilljilly
When your hair looks good, you just feel better. Don’t you think?
I’ll bet you look fantastic. I think the problem people have with wigs is that they don’t muss them up a bit. Looks too “wiggy”. You have to make them look a little natural.
I prefer to save my energy for something useful and leave the “idiots” alone — they know who they are.
Most of the time it works.
Update: Had my first of four cycles/sessions of chemo today. I was front-loaded with Benadryl just in case I got an allergic reaction to the Taxotere. And some anti-nausea medication. Then came the Taxotere. That took an hour. Then came the Cytoxin. That was only a half hour. Guess it’s the ugly twin and a bit harsher. No reactions anticipated before the 3rd of 4th day. Then look out, I’m told. So we shall see. I have to go back on Monday for an injection of white blood cells. So I guess there’s going to be something happening inside the body whether I feel it or not.
So let’s see. Quint got the streaming device for Netflix hooked up. And in case I get cold just sitting there, I have an extra electric blanket to keep me from getting chilled.
This morning when I woke up, I noticed that my face was flushed. Nothing bad, just looked I’ve been out in the fresh cool air.
It’s 38 degrees here today in Middle Illinois. I’m going to church to meet with the little Junior Quilters. That’s always a hoot. And they don’t get so close that I have to worry about catching any germs or anything.
Tomorrow I may sit in the back of the church, though.
So far, no side effects. Except I noticed that I gained 2-1/1 pounds when I stepped on the scale this morning.
I can’t tell you how much I appreciate all the information you’ve shared with me. It really helps to know what to expect.
I did read an article in the Ladies Home Journal while I was waiting for Quint at the periodontist the other day. There was a little blurb that researchers have come up with a breast cancer vaccine that kills breast tumors in mice that are “engineered” to develop breast tumors. All the mice that got the vaccine had their tumors eradicated; where the mice who did not get the vaccine all died. The report says that the vaccine should be ready to go to clinical trials in humans in five years or so.
That would be great. So all of us who are buying time with this chemo and radiation and other treatment just need to hold on. It’s not too far off in the future when we can get a shot for this just like the pneumonia shot I got the other day. Who’d have ever thought that we could get a shot for pneumonia?
I want to see if I can find the research article that the article was referring to. The Journal article didn’t cite any university that I can remember.
— Jane
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