I hope you are well. I have missed posting here, but I just haven't had the mojo. I have been keeping my nails polished though.
I have been photographing my hair when it looks nice because I will lose it in a few weeks.
I got two free wigs and some free makeup from the American Cancer Society!
And I decided to write something I am very nervous to publish, but I have wanted to do it for a long time. I have been keeping myself to myself for a long time now. Now that I have cancer, I feel that maybe I need to go ahead and say what I want to say, because maybe it could help someone else to talk about these things. And I love helping people.
I have decided to write here about my experience with getting HER2 positive, hormone positive Stage 1 breast cancer at age 49 in a couple of new blog features. One I will call After the Cut, which will detail my treatment after lumpectomy. The other one will be Platinum Linings, where I would like to make lemons from this lemonade and focus on the positive things that happen to me as a result of having breast cancer. I would like to share aspects of my recovery with you in updates, I will mostly cover things you would not likely expect or know about if you have not had this treatment, or were familiar with it.
Most of us are "AWARE" of breast cancer. I was, and I had some knowledge of what happens to women who get it. They need a lumpectomy or mastectomy, maybe chemo, radiation etc. But there is much much more to know, as I am learning. I will be writing about the effects of my treatment as they relate to my nails especially, and to my life in general also.
I am afraid I will not survive the chemotherapy treatment, so I want to document what happens to me, and the hope is that someday I will look back on this dark time and see how wrong I was. My body is super sensitive to medications. I had the terrible experience one time of taking a medication that resulted in my life being turned upside down. I have often thought of writing my story of what happened to me, it would make an interesting horror movie I think.
Short story version, when I was in my former unhappy marriage, I took an antidepressant. It caused me to feel happier. Very happy. Way too happy. So happy that I could no longer function in my activities of living. Do you know what I am talking about here? Possibly not, manic depression is not something you may be familiar with. I never tell anyone this, it is so humiliating. I was diagnosed as manic depressive - in other words, the antidepressant caused me to become MANIC - and tagged with a diagnosis of BIPOLAR DISORDER. This is a documented phenomenon that occurs in some patients who take anti- depressants. I didn't know this could happen, if I did, I wonder if I would have taken the anti depressant anyway? Perhaps not.
So I got really happy, what is the problem? Symptoms I experienced in mania were:
NOTE: This all happened in my initial severe episode. I do not have these levels of symptoms any more. Now I am able to recognize and stop an episode from getting this bad. The first time I didn't know what was happening to me, so it just ramped right up.
Agitation - a very upset irritated and angry feeling
Hair trigger temper - Part of this was from PTSD from multiple traumas and abuse I have experienced in the past
Mood swings - Anger to crying in moments
Overspending - I thought I could start business or justify spending more money than usual because I think I am very smart and powerful
Loss of Concentration - I could in no way organize my thoughts to do a skilled task like average numbers
Over sexualization - I was taking actions to be with men other than my husband
Drug and Alcohol abuse - I was self medicating with alcohol and weed, to calm myself and relieve the mental anguish
Delusional - I had ideas that I could start a successful business sewing pillows which was pretty strange for me, or that I could do things or affect change where I could not, like telling my boss how he should do things as if I were his boss. Not a good career move!
Paranoid - I was thinking that people were talking about me, in a bad way, which they probably were based on my behavior.
Outgoing and Extroverted - I was suddenly speaking with strangers, something I never used to initiate I am a total introvert by nature.
"manic depression is a frustrating mess" - Jimmy Hendrix had it right.
The worst thing now I experience is insomnia, mood swings, agitation, and I have some large remnants of a bad temper. I have to be careful and make sure that if I start not sleeping I need to just lay there and try because that is how the mania starts. Once I begin a pattern of sleeplessness it will begin to repeat itself and then I am manic again. I would say that I am doing really well with it now, it is completely in control now, it is almost not a factor in my life at all anymore. I just have to be sure to maintain good "sleep hygiene" and go to bed and wake up at the same time every night. I feel that it knocked my confidence down a huge amount, but I am close to over that now, almost twenty years later.
So now, when my doctors are telling me that I need to take chemotherapy medication with severe side effects I am terrified of having my life altered by medicine again, not in a good way. I could die immediately, or die slowly from the effects of the regimen that I have to take. So here is why I had trouble to decide to take the therapy.
If I take the chemo, I will improve my chances of remaining disease free by 12-15% or so. I was told something like 8 out of 100 women will be alive with no cancer in ten years because of Herceptin, the special drug for my HER 2 + (positive) cancer type. But, 4 out of 100 women will have heart failure from the medication, which may be irreversible, and can happen any time after the medication is administered. There is a risk that I may die from this or the other chemo drugs, or complications of treatment, quickly or slowly, though small. But, I remember the odds of my getting HER 2 + cancer at 49 years old were less than half a percent, so small odds don't mean all that much to me now.
I still have trouble believing I have HER2 + cancer. The only way I know is the lab tested my cancer, twice yes, but the test has a 40% error rate. So in my mind there is a still a chance the tests are wrong. I am putting my life on the line based on some test results in a lab somewhere, that I don't trust completely. This is the hardest choice I have ever had to make. There is a more accurate test I could have had done, but my oncologist poo poohed me, saying if the inaccurate test was done twice it is probably right. But what if it isn't????
Since I wrote last, I have been struggling with the decision to take chemotherapy. It is a very harsh eighteen week regimen with additional treatments for years, with life threatening risks. I made the decision to take the chemo.
I have been very fit and healthy up to now. so I am reluctant to pour toxins in my veins that can potentially kill me. However, I am convinced that the cancer I have is aggressive enough to warrant such a harsh treatment. HER 2 + is very aggressive cancer type and tends to recur pretty fast, most of the time within five years. If I have no chemo, there is a better than 25% chance that the cancer will be back within five years and at that time assuming our current technology, it will not be curable at that point.
The chemotherapy has risks, the drugs have side effects that can prove fatal, however rare. I will lose my hair in three weeks. I just had a surgery to put a "port" in my chest leading directly into my jugular vein, so the chemo can be injected there instead of my arm veins. The reason is that the chemo eventually ruins your arm veins, it is so harsh. Or if the chemicals leak it will kill the spot on my skin where it touches! ERMAGERD.
So I start chemo tomorrow Tuesday June 18th. I have to sit with an infusion going into my vein for five and a half hours that day. First they give anti nausea meds, and other meds to help with the effects. Then one chemo drug for one hour, then another for another hour, then Herceptin for an hour and a half. I will watch the drip drip and wait to see what happens to me. I may have a reaction right then and have to stop the treatment for good or just temporarily.
I could have an allergic reaction right then or in a few hours or days : ( I am sure that is very very rare, but I prepare for the worst and hope for the best.
The odds are very much in favor of a full recovery for me. With the treatment there is an 85% to 90% chance or better that I will be free of cancer and alive in five years. I am doing what I want when I want. I am appreciating what I have and the people I love more than ever. I understand if this subject is not your cup of tea. It is not mine.
Thank you for reading and for your wonderful support. Thank you so much.