Due to the healing process needed when all teeth are pulled, my chemo is going to be way off track. They are talking a couple of months before I can even have the teeth pulled because they are so booked appointment wise. As of this upcoming Monday, I should be receiving my THIRD chemo. Instead, I have only had one. At this point in time, it is unknown how long it will be before I can get back to the chemo.
Eating, while on chemo, is difficult at best. It is hard to find foods that can be eaten or taste good. Being toothless will limit foods even more at a time when eating is extremely important to maintaining my health. Needless to say, this has me very concerned.
When I was diagnosed with breast cancer, I, of course, was scared as hell. The initial roller coaster of thoughts and emotions were quite the ride. Then came determination. Determination that I would beat this. I would survive. Also came trust. Trust in my doctors, my health care team. I was being thrown into a world that I knew nothing about. Thrown there at lightening bolt speed. I had no choice but to trust my doctors and my health care team. After all, they went to school for this. This is what they are supposed to know best.
All I wanted to do was deal with my cancer head on, go through the treatments and get to the other side. The goal: to LIVE and be able to get on with living. No one said dealing with the cancer was going to be easy, but it seemed pretty straight forward to me at the time.
Now, a mere three months later, I am back at square one. Scared as hell. I am trying hard to keep the determination going, but it is getting bumped all over the place, making it very difficult to stay focused. Things are a mess. My trust is broken.
Things happened with my health care in the clinic and in surgery that were not good. They are items that could have been and should have been avoided. Upon receiving my first chemo treatment (July 11th), I had a bad reaction. This last week, I find out this too could have been curtailed, perhaps avoided. The bad reaction caused me to be hospitalized due to further complications and because I was close to death. Again, I find this could have been avoided. I totally trusted my doctors and health care team. As it turns out, this was a mistake. They were not informing me of all necessary items that I needed to know prior to my receiving treatments, or prior anything that was done. But how was I to know? How do you know what you should ask when no one has told you the questions. It isn’t that I didn’t look up information on my own. I did. But without full information from my doctors, I wasn’t able to get all the answers, even on my own, that I really needed. You can’t verify what you don’t know in the first place. The final loss of trust comes in finding out they did something totally wrong. Provable wrong. This wrong most certainly contributed, may have been the entire reason, I ended up near death and in the hospital.
On Monday I obtained copies of my medical records from the mammogram forward from the clinic. They are full of errors and inaccuracies. They also, do not even agree with each other. A good example: It is my left breast that had the tumors and the mastectomy. Throughout my paper work, they list it as my left breast on some pages and as my right breast on others. There are discrepancies between the doctor’ surgical statements and pathology. The oncologist states in his initial report that my teeth are in bad condition, yet he never mentioned this as a concern or the possible dangers involved verbally to either me or my husband prior to chemo starting. There are also many other problems and errors in the paperwork. Finding this out is mind boggling. Now I don’t know what to think. With all the other problems, I can’t help but wonder if the surgeries were the right way to go, or if in reality I might have actually had other choices had I gone to a different clinic, different doctors.
All the cancer centers in this area are not “in this area”. The pickings are very limited. The few that there are, are mostly new centers and I question their experience level. I checked out an excellent center today in the same city where the dental clinic is. This cancer center makes the clinic where I am going now look like playschool at best. But being approximately an hour and a half away, I haven’t a clue how we could swing my going there. Just the travel alone, plus the number of appointments needed, not to mention other aspects would become a challenge. Plus, now it looks like I will be going for treatments well into the winter months. Wisconsin winters are well known to be full of surprises and not easy to travel in. All this with what vehicle?
Somewhere, somehow, in all this, I need to fit in finding a job. Thanks to my boss of nine years making such a timely decision to “cut expenses and reorganize” a few days after I tell him my diagnosis. Hairless, toothless, cancer, chemo, radiation treatments and all. Great credentials.
Having invasive lobular carcinoma with lymph nodes already involved is bad enough. Knowing that this type of cancer tends to be more aggressive is unnerving and frightening.
Knowing that I don’t trust my doctors anymore is horrifying. Having that mistrust feed into my decision making processes right now? It puts me on a whole new roller coaster ride.
Fighting every step of the way, in so many avenues of my life right now is starting to take a toll.
1 comment:
I am not very good with words but I just wanted to let you know that I think that you are a brave woman and I admire you very much. Keep the courage up and my best wishes are with you. I will be there to follow your progress as you fight your way out of cancer.
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