Where am I now…

The iron supplements did the trick. Within about four days I started feeling my energy levels and strength increasing. The lightheaded feeling I would get when I would stand started going away. The feeling of being out of breath and almost collapsing whenever I did a simple task also went away. I did however reschedule the radiologist and oncologist appointments I had on the 2oth and 23rd of January respectively. I didn’t feel strong enough to make the trips. To be quite frank I was too afraid they would drain me of all the energy and strength I had gained and set me back, so I called and rescheduled the appointments for two weeks out and asked that they be scheduled on the same day so as to reduce the amount of travel back and forth. When they called back with the appointments, they were scheduled on 3Feb an hour apart, the radiologist at 1pm and the oncologist at 2pm. This was great.

By the 28th of January, I felt strong enough to see my plastic surgeon and discuss the expander. I explained to him how uncomfortable it has been for me ever since it had been put in and asked him if I would have the same problem with the implant. He told me in most cases the implants since they were softer were generally well accepted but that it is possible I would have the same problem. We also discussed the problem with me getting to and from his office for the saline injections and that the reconstruction and surgeries would be difficult for me to continue with due to not having anyone who could help me.  All those who are my friends have full time jobs and families to take care of so there is no one to help me at the level that would be needed for the reconstruction process. Then we also talked about my need to get back to work, not just for financial reasons but for my emotional welfare. I need to get back to some semblance of normalcy and start feeling productive again. I told him about the bad reaction I had to the chemo and how it had destroyed me physically for almost a month, making it very difficult for me to take care of myself as well as my daughter and that this was the first week I felt able to get out and do anything. He completely understood and so we discussed what it would take to remove the expander. His description of the process was much simpler than I had expected. He told me I would be able to drive myself. He would use a local, make about a three inch incision and then pull out the expander, then using dis-solvable sutures, sew me up and then I would be on my way. At most his part would take only about 15 minutes but his receptionist told me to allow for about 1 1/2 hours at the clinic. He also told me I would only need about 6 hours off work, if I am working by then. We scheduled the procedure to take place on 23February.

The following week, I was feeling much stronger and had no problem making the radiologist and oncologist appointments, and I did not feel any drain on my energy or strength.

The radiologist described how they would do the radiation treatment. Basically the right quarter of my upper body would be radiated from my shoulder down to a couple inches below my breast, from the middle of my side to the center of my chest. The chest portion would be radiated cross-wise to a depth of where it would just graze a small section of my lung. He said since it is my right side my heart was well out of the way of being touched by the radiation, however my ribs and a small section of lung would be. My shoulder would be radiated from front to back and back to front going completely through my body and some residual radiation could possibly touch my throat even though they try to shield it from doing so. Side effects would be the feeling of being tired and would grow more so as the treatments progressed to where the week following the last treatment would be my worst. My skin would become tan, then red, and possibly blister the last week or week following the last treatment. My skin would become thinner and always be that way and its color would become lighter than my other untreated skin and be sensitive to the sun. Scaring will occur in the areas radiated including the small section of my lung which if I have any illness involving my lungs when I’m older could possibly cause breathing problems. My throat could become irritated and cause difficulty in swallowing, hot or spicy drinks or foods could be difficult to eat or drink or irritate the throat. It was recommended to just stay away from them and let hot things cool down. There have been a couple cases of ribs cracking or breaking as well. There were probably more he mentioned but these are what I remember without listening to the recording I made of our session together. The normal treatment is 16 treatments, one every day, Monday through Friday, for three weeks plus one day. When an expander is in place they increase the treatments to 28. I told him the expander would be coming out on the 23rd. He made note of this and then told me that would make the number of my treatments 16 however we would have to wait at least two weeks after the expander is removed before treatment could begin because I need to be healed completely before doing any radiation treatments. I basically told him I was not comfortable with doing radiation and my choice was to not do them. I explained what had happened after my third chemo treatment and after hearing this and my explaining to him that I am a single parent without any full time help and that I can not end up flat on my back, he understood and said he supported my decision.

There are a few comments I want to make about this meeting with the radiologist. He obviously could tell by my reaction to his description of the procedure and side effects that I did not want to do the radiation treatments. Before I even told him so or asked, he told me if his mother or wife was in my situation he would make the same recommendation as to treatment and that he didn’t know what else to say to try and force me to do the treatments. I found his use of the word ‘force’ interesting. It was as if he knew the only way I would submit to radiation treatments was if someone forced me to. He is either very good at reading someone or he read the family counselor’s report on our discussion and/or my oncologist informed him of my mental state of not wanting to do these treatments. It doesn’t matter at this point because the incident following my third chemo treatment was an obvious message for me to stop any further treatments. I knew from the start these were not for me. My mistake was in allowing others to influence me in such a way as to allow myself to go against my belief and my instincts. I walked out of his office knowing I could call his office later if I change my mind and they would schedule me for treatments but knowing I would not do that unless something happened and it was a last resort. He had also mentioned how this was just a preventative treatment because they have no indication that there is any cancer left in my body. Knowing this I am astounded how they willingly poison people’s bodies when they have no proof of the need to do so.

My oncologist appointment was very simple. I asked her how my blood work looked that was done that day. I was surprised to hear she hadn’t looked at it and told me she didn’t realize blood was taken. I was surprised because our discussion at our last appointment in regards to lab work was to not do any until my next appointment. This was my next appointment so she should have expected it. She left and retrieved the blood work and said everything looked good except my potassium was low. There was no sign of anemia, which I was glad to hear. That meant the iron supplements were doing the trick. I told her I wasn’t willing to do the tamoxifen, that I do not do well with pharmaceutical medications and I have to follow my instincts. I could tell she didn’t like it and she had a difficult time knowing what to say. I then asked her what follow-ups would be done to check for cancer coming back and her response was that they don’t do any routine scans. The reason she said is the studies show they do not help extend anyone’s life and in fact they introduce more risk. The normal followups are breast exams every six months and mammograms every year and the mammograms have to be ordered by my family doctor as diagnostic scans. My next is due in June 2015. She said in most cases if the cancer returns it will show up in the tissue left behind, maybe as a red pimple without a head and if that happens I am to go to my family doctor so he can order tests. I asked her how soon my hair would start growing again and she said anywhere from three to six months following my last treatment.  I was surprised by how long it would take and then I wondered why I would be surprised, I know chemo has a long lasting effect on the body. I asked her what I should expect when I have the surgery to remove the expander in regards to how long it will take to heal because I noticed how small cuts would take longer to heal. She said it should be a normal two weeks that my immune system should be back to normal.  Our next discussion was about my going back to work. I asked her to support me on going back to work full time on the 16th of February. She asked me if I wasn’t sure if I wanted to go back on a gradual return to work. I explained to her how my pay has been significantly reduced and that I would be more stressed over my financial situation if I were to remain off work than I would be on returning to work. I also explained to her that work was more therapeutic to me in that I would be productive and my mind occupied than if I stayed off work without anything to do and my mind constantly thinking about my situation and all the negative things that could happen.  I told her I know family counseling is available and if I feel overwhelmed I can call them. In light of this she agreed to support me on returning to work full time.

Yesterday I heard from my long term disability case manager and was told I was approved for return to work full time on 16February and my employer has been informed.

I will be honest and say that mentally I feel like I’m in a conundrum or even the twilight zone. On one hand, I could be completely cancer free. On the other hand, those little buggers could be traveling all through my body trying to find another foothold.  But in reality I feel like I’m somewhere in the middle and I need to figure out the best natural product to take that will increase my chances of not having the cancer come back.  There are so many things out there that do one thing or another, most of them legal, a few that are not legal, and others I have no idea if they are or aren’t. Emotionally, I go from being a person absolutely positive that I do not have cancer, to a person who is absolutely positive I still have cancer knowing it will come back, to someone just hovering undecided in the middle.  When I doubt, I hear my daughter’s firm strong voice telling me, “Mom, the cancer is gone.” And how at that moment I absolutely believed her and I try to recover that moment in time and hold onto it as long as I can.  I have always been a person who can see all sides of the coin, the dark and light and the shadows in between.  Just because I had cancer doesn’t change this, so now I have to learn to deal with this part of me and work on finding a way to focus on the positive. The good thing is I can feel my body getting stronger. I noticed the other day the stubble on my head is getting darker and it looks like it might be growing. This is one month sooner than the oncologist thought it would at its earliest. Again this is an example of how powerful the human body can be if given the proper tools.

I have not thrown all my options away. If I choose I can take the tamoxifen later, the oncologist said it is just as effective unlike chemo which has to be done as soon as possible.  At least for a while I will also have the option of radiation if I change my mind but that one I don’t see doing at all unless I have no other choice. I can go back and do reconstruction later if I change my mind or if after the removal of the expander I find out the discomfort wasn’t due to the expander and I’m able to desensitize the nerves. My plastic surgeon showed me I can massage the area after the expander is removed to desensitize the nerves if it was the nerves causing the problem.

To be honest I don’t see a reason to do the reconstruction. Whether I do it or not, my right breast will never appear or feel normal to me. I’m not sure that reconstruction would change how I feel when I look at myself in the mirror. Maybe it would because it wouldn’t be so immediately obvious but I’ve never been one to hide behind a false facade. For much of my life I wore no makeup. I would wear it when going out in the evening with friends to go dancing or dinner or such but for normal everyday activities I rarely wore makeup, even going to work I would go through periods where I would wear it or not wear it. I’m about people accepting me as I am. I’m also not about making other people feel comfortable. When I see people in wheelchairs I am all too familiar with that uncomfortable feeling that comes over people of not knowing what to say or wanting to look away and pretend they aren’t there but I force myself to look at them, in the face and smile. I want  them to know their disability does not stop me from seeing them as a person. I want others to do the same for me. So, if I choose to go back and do the reconstruction, it will be because it is something I want that will bring me a better quality of life, it won’t be because I want to hide behind it and pretend all of this didn’t happen or to hide from the scar that is now there. That scar for me is a symbol of my survival. That I went through something awful and traumatic, even horrific and survived. And for the next five years it will continue to symbolize my survival as long as there is no further sign of cancer. It will remind me every day to renew my belief that I am cancer free.

As much as I enjoyed my time of not working, I am glad I am returning to work and I’m looking forward to it. This next week of still being off work, I need to do those things to get my home and myself back to a somewhat normal schedule. I need to go see my chiropractor and stop in to see my Naturopath.  Any treatments from my Naturopath will have to wait until I am back to full pay and know I can afford them. I found out my IV Vitamin C treatments I took last year are not covered by my extended health coverage so any treatments will have to come totally out of my own pocket. This was disappointing to find out, apparently only the visit itself is covered which in my opinion is fucked up (pardon my language).  I wish there were a way to shift all my health coverage that I get under standard medical care to that of natural health care otherwise all I see is the cost of my healthcare is a waste of money because it doesn’t cover what I choose to do which is natural healthcare. There needs to be a complete revamping of healthcare coverage. But I started this paragraph talking about going back to work, and wasn’t intended to get into healthcare. However, in my case, the choices of healthcare coverage is through my place of business and what is offered is not sufficient for my choices in life, Somehow this has to change.

In other things, I’ve noticed I have been very neglectful of my houseplants. I don’t know if they will survive this particular period in my life. It is sad to look at them and know that I didn’t even have the strength or mental desire to water them when they needed it. Even now I wonder if it would be better to let them die than try to revive them. I wonder what this says about me? Other things in my house were also neglected and it might give you an indication of how during the worst of my time, I feel as though I had also neglected my daughter. This hurts me more than the neglect of my plants and other parts of the house and though I know it is important to forgive myself because in some ways it was out of my control, ultimately it was in my control, because I could have said ‘no’ to the chemo before it was ever started. This is what I have to learn to forgive myself for.  That decision is what took me down this road and yes, I’m having a hard time forgiving myself for making that choice. Maybe it is too soon. Maybe I need to get some distance on it so I can look back with an unbiased eye and understand what brought me to this point. Or maybe I just need to accept it and move on.  In time, I will understand, or more likely, like I do now with all my different decisions in life, I will be able to see how this moment in my life was important in order for me to make a certain turn in my life that will put me on the path I needed to take.  Some day I’ll understand why it has been important that I do this alone, without a significant other, or partner to help me. That above all else is something I just do not understand.



About Kate Spyder

I'm a creative individual finding her way in her writing. I enjoy expressing my deep thoughts through poetry and stories. I hope you enjoy them as much as I enjoy writing them.
This entry was posted in A Submissive's Journey, Journal and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

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