It's now time to visit Miles Perrett Center. It's only one street away from me. Nothing inconvenient about getting there. It's just another hurdle to leap that confirms my status as a cancer patient.
They support, a free wig that they help you select, snoods, head wraps and people that are eager to answer any questions you might have.
I remember sitting in my primary doctors office when he got back the results of the ultrasound and the needle biopsy report from the pathologist.
I sat there beside April waiting for him to come into the room. When he finally appeared, unbeknownst to him, his staff and met me in the hall to tell me about all the scans they had scheduled for me. The doctor didnt' have to tell me the diagnosis; his staff had jumped the gun. This is NOT proper procedure for the office staff anywhere.
I remember in that fog him mentioning he had made an appointment with an oncologist. I wasn't ready to hear those words. It was the nail in the coffin. ME? I need an oncologist? Those words were the ones where I lost it. It was final. The results were in and once I made that appointment my path was set. I wasn't ready to go. My brain was screaming at me. I don't want an oncologist. Shaken and tearful, I just wanted out of his office. Whatever he said after that, I depended on the daughter to retain. She collected appointment cards and wrote down what was being said. My brain had locked up and as far as I could tell, that doctor was speaking Russian. I was closed down and not able to digest anything more.
We as Registered Nurses would get back the results on the tests the doctors ordered. We weren't allowed to tell the patient anything. "You doctor will be in to discuss the results of your test." was our reply if they asked if we had results. Nuff said. After the doctor delivered the results, we began education and support with them. Some just wanted to talk while others weren't ready. We waited. We quietly entered the rooms to hang our fluids and dispense meds and question them on side effects, offer ice creams or any food they might be able to tolerate and then quietly slipped out of the room. Eventually questions would begin. A few at a time. After interacting with their nurse for a while they became comfortable with us and more conversation would follow. Questions, questions and more questions. If I didnt' have the answer, I was up front with them. I would tell them I don't know the answer to that but I will find out and get back to you.
Touch: some patients like to be touched while others don't. Usually they reach out the first time to grasp your hand. Sometimes I would stand by the head of the bed when the doctor visited and I was making rounds with him. Sometimes the news he was delivering was harsh. I would feel the patient move her/his hand to mine and grasp it. Human contact can be very soothing. When a patient was having an MRI, I usually laid my hand on their foot just to let them know they weren't alone in that enclosed tunnel. Human contact.
After chemo I'm very emotional. Few phone calls are accepted. I talk to the husband and daughter that always check on me and one other person. I have known this person since the third grade. We Skype. She sees my tears and fright and I can allow her to. I've known her since the third grade. She is like a "sweet sister" to me. Sisters come in all grades and for that I say, "you don't get to pick your family" and I let that go on by. Kathy, my sister by another mother, is always there on chemo day. Just watching television together after my "I'm scared and I feel sorry for me" episodes, she lets them roll on, she listens quietly and then we eventually end up watching television together. Some of her dorky shows of course.
Kathy and I have tried to figure how just why we have been able to maintain such a long relationship. She watches very few of the television shows I watch, has never flown in a plane, never ate shrimp or any seafood for that matter, she is an excellent joke teller/story teller. She doesn't mind being goofy, her vanity is low on the scale of "I give a sh*t."
We are both hard headed, love to travel, she is kind to everyone and usually is looking for a way to make people feel better about themselves and their situations.
Yesterday the oncologist read the new ultrasound. No tumors in the mid line of the breast just as the rad tech predicted. My chemo was changed. I am now on Cytoplastin and Taxotera which is a sister to Taxol. When I hung Taxol at the hospital, we had to keep keen watches on the patient of them having myocardial infarction. Scary. I hated running it.
For the next 4 months the new chemo will be run. Another ultrasound and an MRI of the breast will be done. If the lymph nodes have shrunk enough to have surgery. We want the lymph nodes to shrink so the surgery won't require a large area of the axillary to have to be removed. Removing large areas there could cause lypmhodema. Lymphodema would case the right arm to fill with fluid to the point that it would be very swollen and unusable and painful. It would have to be pumped to remove fluids..frequently. So we wait on shrinkage.
I'll be going back on Thursday (chemo was on Tuesday) to get an injection of Numoblastin. This injection will prevent my WBC's (white blood cells) from falling. Should they get too low, I could get ill very quickly. I'll get the injection then in two weeks, I'll be back for blood work to make sure my WBC's are WNL. (with in normal limits).
Now for some more wonderful news. That injection may cause bone pain. The bone pain usually lasts for 3 days. I know soon ..real soon if I will be having this. On the upside...no Oxilplatin and Decadon for now. I can drink cold fluids, eat ice cream and not have to wear gloves to get something out of the fridge. My bare feet can patter over the tile floors without feeling on fire.
I'm having my daughter make me a big pitcher of iced tea. She makes the best..and I'm sipping on it until that pitcher is empty!
Of course each time we visit the oncologist, she leaves us with a little more information that we have to digest and adjust to.
This time she bombed us with
"you do know this could return?"
She had mentioned early on about there being no guarantees. I wanted to ask if I got a refund on the 100,000.00 spent on this. Of course I didn't.
My first visit, she said she could fix this. I bought this up to her. I then asked...
"are we just buying time?"
She was quick to say
"No, we are going for a cure. But again it could come back and we will deal with that when AND if it happens."
THEN she said "We will leave some of this in God's hands."
Wrong thing to say to me.
I quipped back "What the hell was he doing when I got this? Out playing Golf? If he can fix it, then why did he afflict me with it and why is he doing it to all those babies that are dying every day."
Peoples beliefs have never made sense to me. Please explain the inconsistencies. That's all I want. Have it make some sort of sense. Don't gather up all the good "outcomes" and attribute them to your God and then ignore all the crappy things that happen that he/she could have stopped. I just shake my head and try to keep my mouth shut. I didn't do so well yesterday.
My question is "WHERE?" Where will it come back to?
Note to readers: This is where the tears came from. I had to swallow this and realize when this treatment is completed, they will always be watching for more. For 5 years I will be taking the 5FU meaning that every three weeks I will have to have that pump hung around my waist and accessed into my medi port. There goes that 21 day vacation in Europe. I no longer am in control of my life for that one week of each month and it sucks. I guess you could say "I should be grateful for the treatment. Remember, there are no guarantees. It all depends on when they caught it and I know mine was caught at a late stage. Not the LATEST stage but close. ...too close for me to be comfortable.
The husband continues to assure me this is just a bump in the road and we will be fine. He always says "we" when he talks about it. He is in and wants me to know it.
Regarding the two tumors that weren't there in the midline of the breast, we can only surmise that the surgeon pulled an OLD film from years ago when I had those two tumors and he removed them. I guess he didn't bother to read the rad report that was done.
At least the oncologist was receptive to my conversation on it and didn't'- try to slide it under the rug. (Hospitals don't have rugs. too unsanitary..but you get my meaning.
I have a pot of vegetable soup on the stove. My friend Pat isn't feeling well and isn't consuming any food. I'll take her a large bowl of this soup and sit with her while she has lunch.
I plan on being busy today..no bone pain until after that injection so I'm going to make this a busy day for me!