…but the effects will be with me for quite a while.
My first chemo infusion took place on January 29th, 2015. The regimen I was on was AC+T. Altogether, I had:
- four rounds of adriamycin (doxorubicin) and cytoxan, every two weeks
- twelve rounds of taxol, every week (low dose)
Each infusion was preceded by lab work (to check white and red blood cell levels) and a visit with the oncologist. Many of the infusions were followed by one or three days of injections, Neulasta or Neupogen. These are granulocyte colony stimulating factors – they “help the body make more neutrophils, a type of white blood cell.” I got those shots when the lab work showed that my white cell counts were low – a possible-to-likely side effect with any and all of the chemo drugs I was getting. Not much I could do for the red cell counts except take multivitamins and eat red meat. Some people are given transfusions, but that was not a great option for me.
I had plenty of other side effects, including fatigue, neuropathy, hot flashes, muscle pain, losing eyebrows and lashes and possibly fingernails, etc. – I moaned about some of them in my tweets. The Neulasta and Neupogen also had a fun side effect: bone pain. (As recommended by my doctor, I took clarityn every day – no one knows why, but it seems to alleviate that bone pain, as well as being useful for my seasonal allergies.)
I had the last taxol infusion yesterday. The staff of Valley Medical Oncology Center came out to give me a round of applause and a certificate of completion. Aww. They were all fantastic. Chemo isn’t fun, but having great people to do it certainly helps.
I can expect the side effects I’ve been having to continue and possibly even get worse for another two weeks, and the taxol will still be circulating in my body for up to a month. Some of the side effects will take 3 to 6 months to abate; I was especially disappointed to learn that I may not get all my tastebuds back for that long. Altogether, it can take the body up to a year to fully recover from chemotherapy. So I don’t know when I’ll start to feel “normal” again.
What happens next?
I can enjoy the next two weeks of seeing no doctors and, especially, not getting poked with any needles (my old favorite vein for blood draws is now scarred and painful, the decent one on the other arm has collapsed and won’t give up anything now).
On June 25th, I will see Dr Patel, the radiation oncologist, to start preparation for radiation. I’ll need a CT scan, and a form will be made to hold my breast in the exact same position for each radiation treatment. Radiation should start about a month after chemo ends, and I’ll have it every weekday for six weeks. Each treatment doesn’t take long, but…
I’m told that radiation can cause fatigue, especially after chemo, but Dr Labban told me that no one is exactly sure why this is; could be that the radiation stimulates residual chemicals in the body, and/or the sheer hassle of having to be there every damn day is tiring. On the other hand, I’ve already had some weeks where, between infusions, visits, and shots, I have had to be in that building every day. As long as I have the energy to drive myself (hasn’t always been the case, lately), I’ll probably get through that without too much trouble. Depending on how tired I still am from chemo by then.
I’ll have a chemo follow-up visit and blood work mid-July, to see whether my blood cells have recovered, which is supposed to happen 4 to 6 weeks after chemo ends.
The port stays in until after my next mammogram (October), just in case something turns up that means it’s needed again (not a happy thought). It has to be flushed monthly with heparin to prevent blood clots forming in it. At least I can look forward to seeing my wonderful oncology nurses, Diana and Mike, for that.
Radiation should end in late August, then I’ll have another month off (presumably to recover) before I see Dr Labban again to start taking tamoxifen; that’s in pill form, I haven’t even looked at the side effects yet. I’ll take that for five years. I’ll be having mammograms and possibly other tests every 6 to 12 months, but I’d have been doing that for the rest of my life anyway.
So… I’ve completed step 2 of a long process (step 1 was surgery). I’m relieved to have got through it (not everyone does), and I guess it was worthwhile to improve my long-term odds. But, as you can see, there’s still a long road ahead of me.
my breast cancer story (thus far)
wow ,that is a lot of treatments ,and wow that is a lot more you need to go through. I admire your courage and you positivity. I wonder ,does it help to be open about it . I am terminally ill and I don’t talk to anyone much ,mainly cause they don’t wont to know. I see you were in my neck of the woods ,I live in Adelaide ,South Australia. I love living here ,would not want to live anywhere else ,it is a beautiful country , and the people here are pretty layback. I continue to follow your progress ,and I pray for a complete recovery for you. God bless you ,Deirdre.
Nicky
People have been praising my courage in being open about cancer, and thanking me for it. Honestly, it’s first a form of therapy for me, which writing has always been.
I have been praying for you. You have been through so much in your life! I am praying that you recover soon. You are quite a lady and have quite a resume. I have been fortunate to have done so many things in my life. My parents were poor but I always felt loved. Not having money induced me to over come. I have so many accomplishments, from picking up beer bottles, selling scrap metal , lack berries when I was 8 yrs old. I have been fortunate through out my life to have done so many things for employment. I have driven tankers
dump trucks dozers, graders, trouble-shoot ships electronic systems, Ship Superintendent, Combat Production Manager ,operate hydro plant generators, Air Crew of a Navy bomber. I have always felt that you, likewise have many accomplishments and hardships. You need to realize what a strong woman you are. Look back and give yourself a hug and pat on the back!
You are a winner! Don’t give up!
If this can be of any encouragement to you, I had four rounds of high-dose AC (no Taxol), with port, etc., followed by 6 weeks radiation with a boost beginning with lumpectomy in January 2000 for grade 3 stage 1 triple-negative cancer. Found the radiation portion to be a piece of cake compared to the chemo, as you may also. As you probably have already experienced, one of the hardest parts of this nonsense is the mental stare-down of waiting for follow-up results. It gets a little easier as time goes by; and, you will probably feel pretty good just a few weeks post-chemo. I wish you all the best and really enjoy your website. Thank you for showing yourself bald. BTW, your intelligence really comes through in your eyes without any of that hair distracting the viewer……who needs hair in August, right?…..will be thinking of you.
You’ve had a fascinating life! My daughter (an aspiring journalist) should interview you. And… thanks!
Thanks! It’s always good to hear others’ experiences. Especially about how you cope with always waiting for results.
Just left a post asking what treatment you had and wonderful world of connective pages on internet sent me to this one. My mum had surgery in Dec, FEC chemo from March to last week (6 sessions) but last 3 reduced dose because of 2x hospitalisation and also cold agglutination disease. Shes starting radiotherapy to the breast next couple of weeks for a month, as you are. I cant find anyone online for support re cold agglutination and triple negative BC and been given same treatment. Any help please? My mums exactly same feeling as you, She has last chemo last monday and they burnt he last vein she had working well .She is so fatigued (and dont know if switching off as well as overwhelmingly fatigued). Her hair is coming back since reduced dose. How has yours been x
Mum had tattoo dots put on when she had CT scan last week, for radiotherapy. My dad had radiotherapy for throat cancer in 1993-4 ish, had a plastic mould made.
Have a look at the forums on breastcancer.org – many different experiences there, with specific diagnoses and treatments. I haven’t heard of cold agglutination. My own tumor was a “fairly aggressive” double negative – better news than triple negative, but still not great. My doctor friend told me in the beginning: “It will take some work to get rid of this, but you will.”
I have PTSD from US military service. I avoid social interaction. I also avoid internet forums because it leaves one open to every one including the government. I have made you an exception. I could write a book of my life but I lack trust and avoid limelight. I enjoy the privacy and the seclusion of my home and rural isolated property. I live in the country and avoid the city life which is a stress trigger.
I hope make an exception and travel to the Italian rural areas away from cities. I would like make an exception and visit the Castroni family in Rome. I would like to trace my roots and find
more about the Castroni family in Italy. I have enlisted my brother Mario and his family in going to Italy May 2016.