Scans and results continued...

I don't think there is any amount of medication that can keep anxiety levels down when you're waiting for test results. I use to watch Brothers and Sisters and remember the cancer story line when Kitty was going through chemo and then had to go back for her check-ups. They did a really good job portraying what one might go through.
She tried to appear confident and in control for the sake of appearance, but her husband was terrified as was she. You just have no idea what is in your oncologists folder. What's more, it's impossible to read your doctor's facial expressions. Now, Dr. Mcginness is easy to read. I've been going to her for a few years now and I can always tell when it's good news or bad news. She almost never smiles when it's bad news. During her examination, I was terrified. She had yet to see the results in my scans and she started to prod around my scar area from the mastectomy. She didn't let on that she was concerned, but I could tell by her demeanor. Not to mention, she usually doesn't poke around as much as she did that day. After examining me and taking a couple of pictures she came clean and expressed concern that she didn't know if I had a new tumor growing, or if it was simply scar tissue. She simply couldn't tell by just feeling around. If that doesn't put someone in a panic, I don't know what would. The thought of having to endure more chemo and more testing scared the shit out of me. I didn't know if I was strong enough to do that again. I didn't want to go through that again.
After my appointment with Dr. Mcginness, I was sent over to Dr. Sharma's office for the next one. Of course, I had to wait because she hadn't received the results of my scans yet either. I suppose the bonus of having these done at the hospital is that I get to find out that day and I don't have to wait to be called for the results. I was so glad I wasn't going through this alone and that Melanie was there with me. All sorts of scenarios were going through my head. I wanted my life back. I wanted my children back. If I had another tumor, that meant my life still wasn't my life. My life belonged to them. My life belonged to the poison of chemotherapy and all the other medications I would be on.
Dr. Sharma finally came into the room after waiting about 45 minutes and going through the whole what-if's in my head. She examined me and told me I was ready to start radiation. I suppose I was relieved by this since I had to wait months for a wound to heal. Then, she asked me about my teeth and I have the okay to get those fixed as well. Dr. Sharma then says before my next appointment in April she wants me to have completed my radiation and have my teeth fixed so she can put me on another medication for my bones. I thought the bone medication was to strengthen my bones, but it's actually to prevent the cancer from spreading to the bones.
Dr. Sharma was about ready to leave and I ask her if she received the results from my scans because I still hadn't been told if I was cancer free or not. "Yes, your scans are fine." Good God. That's all I wanted to hear. I was so relieved that I started to cry on the inside this time as to not lose control in front of her or Melanie.

THREE MONTH SCANS!!

Once you get through chemo, surgeries, etc., and you know you are clear and free of cancer, you still have to endure the check-up appointments. I have to go every three months for the next two years before my oncologist will release me and I can go to six month check-ups. When the appointment approaches, I go into panic attack mode. I can't sleep for days before and I am constantly stewing about the actual day. There aren't words to describe the fear of the unknown. That's exactly what it is. The fear of the unknown.
I have been through so many CT scans, PET scans, bone scans, MRI's, biopsies, etc. You go in and lie down on a table that moves up and down while the machine does its job. What's there to be scared of? The tech turns down the bright, florescent lights to a dimly lit room for a calming effect I suppose. Although they are trying to make your experience a good one, there just isn't any way to take away the anxiety.
What takes away the anxiety? Good friends. My best friend on this God's green earth came with me and helped me by cracking jokes the entire time. I'm sure it isn't fun for anyone to accompany their friend to appointments and have to sit for countless hours waiting, however, Melanie didn't complain once. Well, that's not entirely true. She did complain about my driving, but we'll talk about that later.
My first scan of the day and I'm sitting in the "holding" area waiting to be pricked by yet another nurse. Correction, according to the tech, infusion team. Team? Really? How is it a team when there is only one member of the team on call for the entire hospital to come and access my port? I guess my first mistake was calling her a nurse, which she was by the way. I suppose it's no longer politically correct to refer to male and females as nurses anymore, they would rather be called a team. Okay, no big deal she's a member of a team. Of course, I tell Melanie about my mistake and she starts cracking jokes about the tech. Oh did I mention the tech was male. I guess I offended him. Never mind, I'm about to go into a room to determine if my cancer had returned or not.
It's not his fault really. If you think about it they do have a difficult job especially when these techs get rotated so much. How hard is it though to read a chart? "Have you ever had this done before"? Really? Can he not see my scar? Can he not tell that I have no boobs? "Uh, yes." I say. "Only about a half a dozen times." In his defense, maybe he has to ask that question. At the very least, he could have been more observant and say, "I noticed your chart and looks like you have done this before."
Finally, it's time for the scan. The CT scan is really no big deal as long as you're not claustrophobic. However, they can give you something for the anxiety beforehand to ease your nerves. Personally, I took an extra dose of happy pills that morning. If they are examining your chest area, you have to raise your arms above your head and lay there for about 20 minutes. Obviously, it's not a pleasant experience especially when your arms start to get tired, or your nose itches and you can't scratch it. If you do scratch your nose, then they have to start completely over. I did find a trick though and you can clasp your hands which helped me a whole lot.
After the CT scan was over, it was time for the PET scan. If you are having contrast dye, the tech comes in and prepares the port or the IV. The PET scan takes about 3 1/2 minutes, but if it were any longer, I'm not sure I could have handled it. The tech explains that for about 15 sec you feel like you have to pee. However, it's more than that. Your whole body heats up from the inside out to the point that you feel like you're going to scream and you're not going to make it through. All you want to do is jump up off the table and pull the port access out. Meanwhile, there is a techno type music playing in the background. I guess that's what the tech wanted to hear, because it was extremely annoying to me.
Finally, both scans are complete and I get to go home! Well, not home exactly, but I'm half-way done.

Why are there certain types of people who are out there whose primary goal is to stir the pot? It's almost as if they want to start drama for you. Some of them mean well, and some of them just do it for the pure purpose of attention. Then, there are those out there who do this because they are so unhappy in their own lives that they want to make everyone around them unhappy as well. When you surround yourself with these individuals, it's very difficult not to get caught up in the gossip as well. You know the kind of conversations I'm talking about. "Did you know that so and so did this"? "Did you know that she went out and got a pop today"? Really, whose business is it that I went out and got a pop? Do you even know it was a pop, or could it have been ice water? My personal favorite was when I was resting at home from chemo and Becky rushed over to see if I was ago. A phone call had been made to my father that my husband was in town and they worried he was going to come by the house. What were they so worried about? If he had been in town and if he had showed up, that's my business. Did they really think he was going to physically harm me? Then, after I had convinced my dad that I had in fact talked to my husband that morning, and he was eleven hours away he revealed what had happened. What's even more funny is that I get a text saying, "I heard your husband was in town. Did you have a nice visit"? The person that sent the text was the person that started the whole circus of drama. Don't you have enough to deal with in your own life that you have to cause me unneeded stress?
Some people just don't get it. What exactly is stress to a cancer patient? Stress is constant badgering. Stress is gossiping about the chemo patient behind their back. Stress is sharing personal information with others who didn't need to know their full history. Stress is calling SRS on a cancer patient and then casually forgetting to let them know that the person has cancer. Stress is trying to convince a cancer patient that she needs to divorce her husband. Stress is trying to figure out what you're going to eat and be able to keep down that day without having to beg someone to fix you something edible and healthy. Get the picture yet?
Now, let's talk about support. Support is showing up! Support is helping a person who isn't prone to asking for help. Support is helping, not meddling, not taking over completely. Support is just being there for a shoulder to cry on. Support is making it okay for you to take off your hat because you know that person's head is sweaty and uncomfortable. Support is making it okay for that person to rest when she/he needs to rest. Support is making it safe for that person to lean on you.

The Monday following my recovery time from my double mastectomies, a social worker from Department, Children and Family showed up on my doorstep.
"Hello"? I answered.
"Hi, my name is Jody and I'm a social worker with DCF." She said. I was suspicious as to why she was here, now, which is why I asked to see her identification. I didn't understand why she would be at my doorstep when technically, someone else had legal guardianship over my children. Technically, I didn't have any custody.
I questioned her and she explained that the children's guardian ad lietem, Mr. Buck, had asked her to do a home visit because the guardians were relinquishing their duties. I still didn't quite understand why she was there. At that point, I didn't trust her because I remember Becky telling me her friend Jill was the supervisor at DCF. I was careful of what I said and I tried not to be too defensive.
I don't really remember much, except that she went into the kids' bedrooms and took pictures. She asked me a few questions and then asked me to sign a medical release. I hesitated at the medical release because I didn't understand how having that information would prove whether or not I was a good parent.
Now, as I'm writing this I remember my dad telling me that Becky had sent him an email with the statutes for terminating your parental rights. Among the list was mental illness. DCF had already been informed I had undergone counseling and I now I believe they wanted to use that against me. Jody then explained to me it would be better for me if I cooperated and I explained to her that my father had power of attorney and I was instructed not to sign anything without him looking it over first. She still pursued it and because I didn't have the energy to debate her and was doped up Oxycodone and Oxycontin, I signed it. Oh, did I mention she knew that I was heavily medicated?
Why should my cancer prognosis determine whether or not my children should live with me or my ex-husband? I did the guardianship voluntarily so that my children would be in a stable environment and so that they wouldn't have to see me go through chemotherapy. I didn't want them to have to watch me get sick, or be so weak I couldn't move off the couch. I didn't want them to see me take all 15 of my medications, or have to see my washed-out face and the dark rings under my eyes. I didn't want them to have to see my hair fall out and have to see me being bald on a daily basis. They had already been through so much. At the time, they were having to watch their own grandmother go through what I was now, having to go through and that was just too much, even for an adult. So why the hell was I being interrogated like an unfit parent?
Everything moved pretty fast when Becky and Roger made the decision to not take care of my children anymore. Instead of returning them back to me, they turned them over to the state basically. If they couldn't have the children, neither could I.
Becky absolutely hated my ex and felt he was an unfit parent as well. However, DCF was sent to his residence as well to check out the home environment and of course it was satisfactory. There really wasn't anything Becky could do about it at this point. She finally agreed to give Manning power of attorney until the guardianship could be resolved so that he could enroll the kids in school before a judge could award temporary custody back to us. I know, the whole thing sounds confusing as I'm writing this out. Becky thought she was sticking it to me when she did what she did. I felt though it was better the kids were with their dad, than with people who were trying to turn our children against.
Not only did they try and turn our children against my ex and I, they tried to alienate them from immediate and extended family as well. When my dad showed that he supported myself and my ex-husband, Becky and Roger stopped contact with him as well. In fact, when my dad was here to support me with my after-care, and he asked to see the kids, they all mysteriously took off somewhere else for the week.

(If I have written about this before, I apologize, but I have a little direction now, and know where I want this story to go. In the beginning of this blog, I kind of bounced around a lot, but now, I'm getting into the heart of this.)

Pontoon

Since we're at the beginning of the new year, I've decided to take inventory of my life. The good, the bad, the ugly. Last year, I had to create a will in case I died, but I hadn't really listed who gets what. Technically, my husband gets everything if something were to happen to me, but I know for a fact he would honor my wishes and agreed to sign a waver stating my children would receive what I wanted them to receive. I wasn't really able to do this when I was going through chemotherapy because I didn't want to think about. I'd start a list, and then I'd stop. Or, I'd start planning my funeral, and then I couldn't finish. My sister would tease me about the fact that I wanted to make sure my funeral went my way and I was too controlling. I have even started to create my video montage because I want to make sure the video reflects what I want to say about my life, not what someone else thinks. I want to choose my music in case something were to happen. I was teasing my son a few months ago and told him I want them to play, "Pontoon" by Little Big Town. Can you imagine after all the tears to have this played. I think it would definitely get a few chuckles.

I don't plan on dying any time soon, but I do want to have everything planned out so that my family doesn't have the added stress of planning. Planning a funeral for loved ones can be very emotional.

When my mom died, we had to make the decision if she was to be cremated or not. We all chose not to have her cremated because it just didn't seem right to any of us. We were all raised Catholic and we knew our grandparents would not have chosen cremation for her. Now, of course my mom hadn't made that decision either, but I think she was okay with the possibility because she knew it was less costly. There goes my mother again, trying to save us some money in the long run. Money didn't matter at that point though.

Thank goodness for our aunt and uncles who helped choose a casket though. None of us wanted to go to the funeral home to choose one so they narrowed it down to three and presented them to us. Since we all have different personalities we all chose differently. I personally, liked the one my Uncle Tom had picked out with the flowers.

I guess I'm writing about this now because it's still so fresh in my mind. It's been nearly three years and I still think about her death as if it were yesterday. Life is too short to be angry all the time and hold grudges.

breasts and bullshit

For me, keeping my breasts was not an option. I think many of us put in this position worry more about our looks afterwards than the health benefits. How sad is that? Something that can save our lives is overshadowed by how we would look without our girls. I was worried about my appearance, how my husband would see my differently, and how sex would be without my breasts. They are a huge part of your life. How would life be different without them?
During a follow-up appointment, the surgeon said I was healing nicely. I looked down and started to cry. I had actually forgotten for a moment that they were no longer there. NO ONE knows what this feels like until they have gone through it. You can have a ton of supporters who love and care about you, but there really isn't anything they can say that can make you feel better about losing a part of yourself.
The drains are not complicated, but highly annoying. Every day for two weeks or more you have to dump the drains, and measure how much fluid is coming out. The "bulbs" that you squeeze the excess fluid from are awkward to say the least. You can't really tuck them away. I wore a special bra that had little pockets for the bulb part of the drain to lay in, but it was still awkward walking around.
Taking a shower after the surgery can be challenging as well. You have to keep the site absolutely dry so the surgical site does not get infected. I wore a bandage and then had an ace bandage wrapped around my chest for several days. I felt so yucky and un kept not being able to take a shower or bath.
I don't think people realize how much of an emotional experience this is. Added to that emotional distress is the Oxycontin , Oxycodone, and Valium they prescribe to you for pain. These types of drugs make you extremely tired and can cause you to become very angry. Sometimes you say something hateful, and you don't even realize your lashing out.
I was so angry at my dad and my aunt when they stayed with me after my surgery. All they seemed to care about was ganging up on me. In fact, my aunt had revealed to me my dad had asked her to gang up on me in so many words. My sister came over the day after I got home and we were sitting on my back porch visiting. Of course, we were discussing my husband at the time. She knew him better than anyone else unlike, those who only knew him for five minutes, yet they seemed to be experts on him.
Anyhow, later that day after I had taken a three-hour nap from being physically and mentally exhausted, my aunt had told my dad about our conversation from earlier. All that did was stir the pot. I believe he was irritated that I had slept so long. I couldn't believe it. I had only been home a day. I think he was more upset that my aunt had told him about our conversation. She had told me he wanted her and him to gang up on me to "see the light." How was that appropriate at all? I had just undergone major surgery and we were still arguing over my marriage. MY MARRIAGE, not anyone elses'. Not his, my aunts, my siblings, my best friend's, but my marriage.
I felt like I was that 15 year old kid he was trying to rescue again. Except he didn't reach out to me back then. I had to threaten my mother that I was going to live with my dad before my grandpa finally stepped in and said I could. Making that phone call to my dad was one of the hardest decisions I had ever made. I was going to be leaving all I knew behind. I owe my decision to my best friend back then, Jeff. He was there for me and I'll never forget that.
I'm not trying to glorify my husband by any means. But the people in my life didn't live with me day in and day out. Do I agree with how my husband handled things? No. But that's still between us. We all make mistakes and we all try to move forward. I try and teach my children that you don't give up on those you love. You may have to put distance between yourself and those people, and sometimes people just don't become the people you want them to be.
My aunt cleaned my house for me which I obviously had been unable to manage for six months. I will always be grateful for that. Her comments about how dysfuncitonal my family is really hurts. It's not her place to call us dysfunctional even though it's true. However, there is dysfunction in her own family that she can't see, or won't see. I don't know which one it is.
I guess I'm pointing all of this out is because when a person is recovering from a major surgery, you don't bombard them with family drama. You try and be empathetic even if you don't know how. You let them make their own choices and support them even if you disagree with them. You love them and ask them how they can help you. You don't simply try to take over their life.