Your memorable moments during cancer treatment?

[OzarkDem]

I'm sure we all have a few war stories, here's one of mine...

I'll never forget getting my first Taxotere and having severe allergic reactions - fainting, dizziness, difficulty breathing. They would take me off the IV, have me lay down on a gurney, then give me more benadryl & steroids, then hook me up again. This went on 3 or 4 times til I could tolerate it, took several hours. All the time my FIL and I watched tv as the Columbine massacre unfolded on CNN. I got through it, but ended up crashing with a staph infection several days later w/ almost no immune system. Days later I was in the hospital again w/ a raging fever on IV antibiotics watching those poor kids funerals.

The day I crashed from the staph infection was a Sunday, and I followed docs orders and went to the local community hospital who had no idea what was wrong with me. They gave me some morphine and were going to send me home, but I made them call my med onc. He casually asked them to tell me to go downtown and be admitted to his hospital "just so he could check me out". He later told me if I had gone home as they suggested I wouldn't have lived through the night.

[ulysses]

1. gotta love the local hospitals, dontcha?

For all that they threw the chemo book at me (A-COPP), I tolerated it pretty well. A lot of nausea between that and the rads, but nothing like the neuropathy a friend of mine has had since her treatments years ago, or your immune system problems. My memories are more emotional - starting to lose my hair when my parents had been too frightened to tell me that it might happen, asking my dad (pre-diagnosis) if this visit to the hospital was going to involve a lot of needles. Things like that. :)

[OzarkDem]

2. I hope I didn't sound too gloomy

I had second thoughts and almost deleted the post, but I figured cancer survivors are used to these kinds of stories. To me, it demonstrates what incredibly strong people cancer survivors are. They experience so much pain, fear and sickness, but they still manage to find a way to smile and hang in there. :grouphug:

I'm reading so much more about research and development of oral cancer therapies - maybe some day treatment won't involve any needles. That said, there is no one better at needles than med onc nurses. I had a favorite and asked for her every time.

I know quite a few of the women in our group have had neuropathy, too. I was very lucky not to have it, but they seem to have some success with neurontin.

Losing hair was scary. I recall standing at the mirror grimly pulling it out in clumps. But it all came back. One of my funniest stories is about going to the hairdresser to get it lightened after it grew back dark and grey and curly. The chemo in my hair made the color come out bright carrot orange. I looked like Bozo the clown. I thought the hairdresser was going to faint. She later got to be quite an expert at coloring the hair of chemo patients.

Another funny story - when my hair was growing out curly, as it grew longer, it just got higher on my head - sort of like Kramer in Seinfeld. During this time, I went into county Dem headquarters one day and was volunteering at the front desk. It happened to be the day that a coup among the Dems in city council caused the council president to resign. I'm sitting there looking pasty, dark circles under my eyes and my hair looking like Kramer as the council, party chair and tv & print news media come flying in the door to do a press conference. I tried to duck down behind the desk so I wouldn't be in any of the shots. After, one of the city councilmen came up to me and said (trying to be polite) "Did you get a new haircut? It looks really nice."

[ulysses]

4. not gloomy at all.

I developed a very black sense of humor while I was in treatment. It's stayed with me. :)

Re: onconurses and needles - yes indeed, with the occasional exception. I remember one who couldn't find a vein in me with a map. I came out of that one with both arms in bandages, crying.

Re: your hair - LOL! Mine came back in curly, too, much to my father's amusement. It never went Kramer, but it was a different look. I did the (poorly fitted, obviously false) wig thing for a while before that. The best story of the whole experience was the day in P.E. when we were playing dodgeball. I got a ball in the head, the wig sailed five or so feet, and an entire gym full of fifth graders became deathly silent. I still have people ask me about that day. :D

[pecwae]

3. I did Taxol

and kept having these weird reactions. It was like brain shivers; can't really explain it. Turns out I was having the reaction to the pre-meds, Benadryl and Decadron. They finally figured it out and stopped giving me Benadryl and reduced the Decadron to a minute amount and I got through it. Neuropathy finally got the better of me and I stopped after the 9th of 18 recommended infusions.

I'm so sorry you had to go through so much in addition to the chemo. I didn't get staph, but got cellulitis in my right mast incision.

I've been a trial for my onc. Each time I see her I have at least 20 typed questions. I have to make my health care decisions based on not only her recommendations, but on my own research and intuition. She says she welcomes questions, but I see her flinch when she walks into the room and sees me with clipboard in hand.

[OzarkDem]

5. That's ok, you're doing the right thing

Onc's should always be willing to answer questions and most are. I have heard them say that breast cancer patients are the most involved that way.

[Tracer]

6. Strangely enough ...

... I have no particularly memorable moments.

It was absolutly cut and dried.

Walk in, get the needle in the hand, get knocked out by the Benadryl, wake up and urge the drip to pleeeeeze finish up a little quicker. Haul myself out of the big black leather chair and go home.

I'm one of the fortunate ones who never got nauseated. I did have quite a bit of bone and nerve pain (the agony of de feet) but that has pretty well cleared up after 7 months.

The second my hair started to fall out, I had my daughter get out the electric trimmer and had her buzz it all off. Better tor me to do that than have it fall out bit by bit.

I'm pretty successful at putting the whole episode out of my mind and carry on as anyone would.

[OzarkDem]

7. Good for you!

So have the rest of us. But sometimes, sharing our experiences with others going through the same situation makes them feel better and a little less alone. Its our way of giving something back and helping fellow cancer patients.

[pecwae]

8. I do the same;

just put it behind me. It was an unpleasant episode in my life, it's now over, time to move on. Oh, I get anxious at checkup time, but I don't dwell on the cancer experience.

I've left some cancer support sites online because I was accused of 'acting like nothing happened.' In other words, I wasn't wallowing in self pity. I don't discount the serious nature of cancer, but all the effort put into some of the pity parties I've witnessed could have been time better spent.

I used the dogs trimmer to shave my head when my hair started falling out! The dogs never use it.

[Tracer]

9. Yes, pecwae ...

... I'll be as supportive as I can be to anyone who is worried about chemo treatments or who is having a really hard time coping with them, but I claim for myself the right to put it behind me and live -- not as a "cancer survivor" -- but just as a person.

--- An aside about hair: When mine started growing back in, my son and daughter liked the effect ("you look like Natalie Portman" sayeth Son. Hah. If only!). However, I thought it looked waaaaay to much like "cancer patient" and am determined to let it grow to my previous length.

[OzarkDem]

10. I haven't been to support group in 2 or 3 years

It was helpful the first year after treatment to be able to have support and learn how to cope after recovery. Our cancer hospital has a great program w/ lots of guest speakers, field trips, etc. I still stay in touch with the other members by email and meet up with them at fundraisers, symposia, etc.

I have seen some support groups that end up becoming a little too exclusive, more like a ladies club. There are good and bad ones out there. And there are some women who never, ever get over their cancer experience. I've seen some women who become emotional cripples afterward, even women who had relatively early stage disease with little or no risk of recurrence.

Everyone deals with the experience in their own way, and you have to give people space and respect their wishes, but its sad to see sometimes.

By way of clarification, I am head of a breast cancer non-profit group which has a hot-line, etc. Its my 9 to 5 job, so I guess I get paid to dwell on it ;-)

[pecwae]

11. Kudos to you OzarkDem

for the service you provide! I have volunteered with many Hospice organizations over the years and nothing can compare with helping others in such ways (except helping our animal friends). I know you don't get monetarily compensated anywhere near what you're worth, but anyone who does this for a living does it for love and compassion. Your personal experience brings a special insight as well.

I tried a hospital support group, but just didn't make a connection with anyone there. Out of the 15 members I was the only one with Her+ disease and the only one who had done any reading or research into BC. It was exactly what you said; a ladies club. Some of the online groups are the same. They didn't work for me, but I know they provide a safe space for many others.

[OzarkDem]

12. Its hard to find a happy medium

Women (and men - we have two in our group) have different approaches and it takes a good facilitator to meet everyone's needs. Its an area I'd like to spend more time on, helping area support groups develop some quality guidelines. It works best if you have a professional involved, or someone who has had some training. I've heard a few horror stories of groups who asked patients w/ mets not to come back, etc. Patients living with long term disease don't get the support they need, sometimes.

I wish you lived in our area, there are quite a few women w/ Her2+ and are real experts - they hang out with the Inflammatory BC survivors. These are real warrior women.

You might try some of the online support groups and forums that Musa Mayer is involved with.
I know her personally and she is a great person, has written some very good books and serves as a consumer reviewer at the Food and Drug Administration. This link is for her Advanced BC web site, but it has the links to some of the online groups and listservs she works w/ for BC patients.

http://www.advancedbc.org/

[Maestro]

13. I was isolated for three and a half days

while undergoing radiation treatment for thyroid cancer. The nuclear physician came in with an orderly I guess who was dressed in a lead suit. He, the orderly, was carrying a small concrete cannister. Inside the cannister he pulled out a pill with tongs. He then gave me the pill. I drank it down. With a geiger counter he immediately checked me to see if I was radiated. I was. The room was covered in plastic expect for the sheets of the bed which were to be burned when I left. The whole thing was just surreal. My door even had what looked like bright yellow police tape strung in the form of an X on the door. They fed me by knocking on the door and leaving my food. I was completely isolated except for quick checks by nurses and doctors that came in. After the geiger counter read at a certain level that was deemed safe, I was allowed to go home. I still could not see my kids so I had to stay away from them for two more days. My levels were fine for adults but not kids. It was just wierd but necessary.

[OzarkDem]

14. Did they prepare you for all that?

Hopefully they told you what was coming and helped you deal with the stress of it. Wow, that is really something. Kudos to you for going through it and coming out so well. It sounds somewhat similar to patients who get bone marrow transplants - in that case to protec their immune system.

Its truly amazing how different treatments are for different cancers.

[Maestro]

15. Nope.

But they did prepare me for the isolation so I had plenty to read. My doctors were all very nice and very good so I really can't complain with the treatment, but that first day was pretty surreal.

[LiberalinNC]

16. There are many things I wish I could forget during treatment, but there

is one that will forever remain w/ me. My treatments were administered over a 24 hour pump. I'd go to the doctor office, have my check up, blood work, etc., and as long as my numbers were up I'd be able to have my treatment. My son just turned one and I was lying in bed feeling awful (I was 28 when diagnosed w/ breast cancer), he climbed into bed w/ me and told me "Mommy, I wish I could make you feel better"...and I told him, "you just lying here makes it all better". He leaned over and gave me a big kiss and hug. He's now 14 and I still see him as my little man.

[pecwae]

17. Children can do that for you, can't they?

Your story brought tears to me. I can just imagine it in my mind's eye. He meant every word of it and his mere presence must have brought you strength. Thank you for sharing.

[LiberalinNC]

18. Yes they do!!! I'm extremely lucky!!!

[iamjoy]

19. "Jinxing" Myself Into The Hospital on Thanksgiving

And my Mom FREAKING out.

The Tuesday before Thanksgiving, I went into the hospital for my chemo. I asked very off-handedly if they served turkey on Thanksgiving. Anyway, they couldn't do the chemo because I was neutropenic (and had a UTI). So, they gave me a shot of neupogen to boost my white count and sent me on my merry way.

Late Wednesday night, I started getting very shaky and my temperature was elevated - only 101, but when you're on chemo, that means call the doctor. So, I did and my husband had to take me to the hospital. My Mom was out of town, my husband and I were trying to avoid telling her (because we knew she'd go nuts) but she tried calling our house and my cell phone and didn't get an answer she went nuts.

So, anyway, the hospital DID serve turkey for Thanksgiving.

[OzarkDem]

20. Spending holidays in the Hospital

Nothing worse, staff is usually low, so is your morale.

I had to spend the 4th of July holiday in the hospital once for a staph infection when my reconstructive surgery failed. I had to wait 2 hours to get some ibuprofen for a headache.

Sometimes it seemed like the only people in the hospital that weekend were the patients.

[iamjoy]

21. Oh, Mine Was Better Than That

I mean, the staff was around, it was fine

But, maybe it was the less senior staff. This one nurse had to draw my blood, and she was drawing it from both my arm and my port. And she made such a big deal of taking it from my arm. She had this super bright light on, almost like she was going to do surgery! And she spent what seemed like several minutes studying my arm looking for the right place. I've become a hard stick 'cos of the chemo and all, but not that hard a stick. Meanwhile, I, who don't usually get squeamish about needles per se (pain yes, needles, no) was starting to get really, really anxious. It's like just draw the damn blood already!