Thursday, May 7, 2009

I feel the need to warn you that today's post may be a tad long. I feel the need to vent about yesterday's all day doctor visits. We were at Barnes/Siteman Cancer Center/Center for Advanced Medicine, parked and walking in the door by 7:55am. My first doctor visit was with the surgeon that will be doing my mastectomy. I knew we were going to be discussing my options, and that he would want to know my thoughts, and yes, I don't mind telling you I was a bit anxious, nervous, whatever you want to call it. I don't know what I want to do! Like I have shared before, so much of this is all mixed up with "self image", "outward appearance", etc. Well, we go back into this examination room, I am handed my "pink gown", which is becoming all too familiar, and after I am examined, we discuss pros and cons of doing mastectomy, bi-lateral, vs, just the infected breast. We then discuss immediate re-construction, vs. waiting the 9 - 12 months like my oncologist suggested. During this part, I got so very emotional, and even began to cry! Yes, me! I just am not ready to make these decisions. Keith said, he thought it was because I was tired, as I have not been sleeping well these past few nights, trying to get myself ready for this very appointment. I knew they would want me to tell them what I wanted, and I don't know what I want! After a long visit, lots and lots of discussion, the surgeon decided I needed to actually meet with a plastic surgeon, who will actually be in charge of the re-construction part of the surgery. Apparently, this surgeon that I was meeting with is only in charge of the mastectomy part. He can take them off, but doesn't specialize in putting them back together. And before they can put together the surgical team, they need to know who the players will be, aka what players I will need. If I am going to wait, and not do reconstruction until later, then they won't need the plastic surgeon on the team. After all this discussion, they escort Keith out to the waiting room again, and move me into the mammogram area to do yet another mammogram to check the progress I am making with the chemo. After all the chemo I have had, they are using the phrase "dramatic response". In other words, they like the way my body is responding to the chemo. The lumps can no longer be felt by physical examination! And the sore is gone and healed up nicely. Of course, all that said, they are quick to remind me that it doesn't change the course of treatment. They do the chemo first, in hopes that the tumors shrink, but even if they shrink to nothing, as they often do, we will still do surgery to remove the breast tissue. Because, that is the only way to be completely sure how much cancer was there to begin with, how much is still there, and if it has traveled through the lymph nodes. They told me that they are leaning towards removing all the lymph nodes on the right side, just to be on the safe side, because of the original size of the tumor. They have measurements they go by, if it is this size they do this, if it is this size, they do this, etc. And because of the size of my original tumor, they said from the start, not a lumpectomy, but a mastectomy. And yes, removal of lymph nodes, regardless of whether they find lymph nodes involvement. So, no "sentinel lymph node testing", removal of all on the right side. Possible sentinel lymph node testing on the side without cancer. After the mammogram, I am escorted back to the surgeon's exam room, Keith is brought back in, and we discuss the findings of the mammogram. Even though they cannot feel them with physical exam, there are still some lurking in there, which means they are insitu (?), meaning those particular cells don't respond to chemo at all, which is the "why" behind the surgery. Leaving the insitu there is like leaving a root to grow back at a later date. They must be surgically removed. So, there you have it. We discuss a little more on the options, him still suggesting the immediate re-construction, because of what the radiation will do to the skin, making it a little harder to work with later. Blah..... I was so ready to move on to the next appointment, and having to use an extreme amount of self-control in not telling him, I get it, I know what you want, so can we move on now? Those of you that know me well, know that I have never been one to do what they (the docs) suggest. Teehee. Like when I did have my babies in the hospital, I did not want a fetal monitor, I did not want to remain laying in the bed, I wanted to get up and walk the halls, let gravity help!! Here I am, having to put up with their routine practices, what they like to do, normally, in this situation, blah blah blah. After, earlier, they liked to throw the phrase around "we like to customize our treatment plan to each individual case". Yea, do I need to bring my tape recorder back in here?? I go back and forth from "somebody else make the decision, tell me what to do, and I will do it", to "don't tell me what is routine, what you like to do. I don't give a rip what you like to do! This is my body, it is not normal, obviously! You keep commenting how remarkably I am responding to treatment, therefore, something about my body must be slightly different?? Can we discuss slightly different options? Grrrrr. Ok, that being over, it is now 10:30am. Yes, been in there with that doctor since 8:15 am. Now, we move from 5th floor, to 7th floor, to get signed in for my blood work/labs appointment for 11 o'clock. We thought we might have time in between for some lunch, nada. We get in for labs, and she asked me when I last applied my lidocaine for my port. Uh, maybe before my surgeon appointment, like 7:30 am or so? She laughed, and I said, how long does that stuff stay active? She said, well, hmm, I don't know, I have never tested it past an hour. Usually, our patients put it on about an hour or so before their labs. I don't think I have ever had a patient that put it on three and a half hours before. I'm sure it will be fine. I laughed and said, I watch Lie to Me, you just lied to me! Every muscle in your face just reacted to that statement! So, she grabbed that needle to poke into my port, and said, ready, one two three, and poke. I didn't feel a thing! So, we both laughed and said, well, now it has been properly tested, it will stay effective for over 3 hours!! She taped me up, and I then moved over to get checked in with my oncologist, Dr. Ellis. Yes, it is now 11:30. We get called back there rather quickly, and I get weighed in ( I lost 2 pounds!!!!! Woohoo!!!!). That's a whole different story. I expected to lose weight through this, and the steroids are helping me put it on! Yuk side effect. The nurse escorts us to the exam room, where I am handed yet another pink gown, and told what to do with it, LOL. The doctor comes in, and does a physical exam, again, tells me how wonderfully I am responding to treatment. The down side to that is, that every week that I tolerate these drugs well, they up the dosage. With the end result, of course, seeing how much they can give me before I actually start complaining! After the examination is done, they exit, telling me I can get dressed and they will all come back in and we will discuss our options. Oh no!! More options?? This is the 6th treatment of 12, so apparently at the half way point, we discuss what we have left, how much time, and where we go after that. I have not actually met with the radiology doctor yet, so I am still rather clueless to that procedure, and that came out in our discussion. When they said that I was to remain on herceptin for a year, they informed me that even after we finish this next 6 rounds of chemo, I would still be coming up here at least once a month for herceptin in the infusion room. Ok, I am ok with that, not liking it, but ok with it. Then I asked about radiation, and the frequency of that. DAILY!! Bejeebers, I was not prepared for that. The length of time would be determined by the radiology doctor, but it could be daily for a week. Which, I know, sounds like such a short amount of time, but I live an hour and a half south of the treatment location! So, I may ask them if I have an option of driving to Farmington for radiation. I happen to know and pass a couple buildings that actually say Radiation Therapy on their signs. I will definitely be asking them about that! 15 miles is way better than 75 miles. Anyway, we discussed what the surgeon had told me that morning, what his suggestions were, about immediate reconstruction. My oncologist did not agree. He wants me to wait 9 - 12 months, not put anything in there that might introduce infection. And even though there are those that don't have any problems with immediate reconstruction, there are just as many that do, so "how do you Americans put it, it's a crap shoot!" He went on to share that he had just spoke in front of 900 breast surgeons in California, and he took a vote. How many favor immediate, how many favor waiting, and he said, it was about even. So, he felt like it was opinion, not science. He favored dealing with the cancer first and foremost. Do whatever is necessary to removing that threat from my body. Then once the body has fully recovered, skin and incisions have fully healed, and then some, you can always go back and do reconstruction. But his suggestion was to put time, alot of it, in between mastectomy and reconstruction. That cuts down on the risk of infection, not to mention what radiation does to the reconstruction efforts. So, if I could just be patient, my body will, eventually, look normal, or at least close to normal, patience is the key factor here. Those that tend to get in a hurry, usually deal with complications and issues that those with patience don't have to deal with. Duh, there is wisdom in that statement, outside the cancer realm!! Anyway, once we were done with all that, we were then free to leave, and walk across the hall to the chemo labs. I sign in, we sit in the waiting area, and I decide to open my computer to maybe get a quick look at my email. (They have wireless up there!) And yes, there, in my email room, in the form of a devotional from Love Worth Finding, was this:

Daily Devotional from Love Worth Finding Ministries
BIBLE MEDITATION:"... even the ornament of a meek and quiet spirit, which is in the sight of God of great price."1 Peter 3:4b
DEVOTIONAL THOUGHT:Are you a woman struggling with the way you look? We all know that women want to be beautiful, especially to their husbands and boyfriends, but so often women think that beauty is found at a cosmetics counter, on a dress rack, or in a jewelry box. Those things are corruptible, and what's in vogue today is out of fashion when next year's supermodels hit the runway. The only thing that will make you more beautiful, day after day, is what you nurture within yourself - serenity. The ornament of a meek and a quiet spirit is worth far more than even the most expensive jewel you can wear around your neck.
ACTION POINT:Stand in front of the mirror today. Imagine Jesus by your side, and ask Him to create in you a gentle and quiet spirit of love.

Yes, I checked the date, thinking, this can't be today's thought. How wild is that?? But there it was, in my email, on the very date that yes, I am a woman struggling with the way I look!! I'm telling you, the tears began to flow, again. Agreed, I was already emotional to the hilt, but to know that even today, in the middle of this path I am on, God knew what I needed right then, right there. And BAM BABY, there He was, to remind me what I needed to focus on, what I needed to "hear" from Him. My focus had definitely been shifted to my outer appearance, even to the point of messing with my oncologist's recommendations to wait, and be patient. I had let the surgeon get in my head, and convince me that to have a better cosmetic outcome, I needed to go with immediate reconstruction. I hear you Lord!!! Thank you!! When they did finally call us back to the infusion room, Pod 3, set me in a chair, I opened up my laptop and re-read it, and yes, started crying again at the amazing miraculous email. The nurse came by, and offered me a box of tissues, "honey, do you need a tissue?" I laughed, "I am ok, really, better than ok, just tears of amazement, and gratitude." Of course, they then hooked me up to the Benedryl, and out I went, 5 minutes, from shooting that stuff in there, to slurred speech, and Keith taking the laptop off of my lap, LOL! Not before me trying to say something to him, and him having to say, "What? Say it again? Slowly....never mind. Babe, close your eyes. We'll talk about it later." LOL! That stuff is crazy powerful stuff, and I don't mind telling you, I like it! But with everything going on in my head, I still only slept for about an hour, instead of the 3 hours. I told him, even with Benedryl, through the veins, way too much in my mind today to shut my mind down apparently. Double the dose!! Last nite, I took Lorazepam, the sleep aide they gave me. Which is why, this morning, Jessy came and told me, that when my four old, Emma Jean, was up last nite, throwing up, and crying for mommy, she came in and tried to wake me up, and said, she couldn't wake me up!! Geez, I won't take that stuff again!! My sweet Emma, crying for mommy, and my daughter having to say, mommy is sleeping, and I can't wake her up! I said, did you shake me? Well, no, but I stood by your bed, and said, Mom! Mom! Mom! You didn't even stir. So, I just dealt with her. Thank you Jessy. So, today, I am spending sitting on the couch, trying to rest some from yesterday's long ordeal. I am on the computer, reading, researching again, reading the community posts from my favorite breast cancer website. I prefer to talk to those girls that are walking this same walk, asking them, what they did, why they did it, and now what would they change, if they could. If they had it to do over, what would they would do. How long their recovery was. On there, you can always find someone, whose numbers are exactly like yours, same age, same diagnosis, "negative, negative, positive", same Grade, same stage, etc. Yet, find 50 different paths they took, and how they dealt and what their outcomes were, and compare. And not only that, how their husbands dealt, their family dynamics, so to speak. I have found it to be very helpful and informative. And of course, have met friends on there that are walking the same path, at the same time as me. Kind of like having a support group, and not have to leave home to join in. I will get on here and post more about my "other" life later. Last weekend I went up and got my mom, brought her down here and she spent the night at my house for the first time ever!! I will fill you in on those details later. As for now, today, I will leave it all cancer talk. Pray for me.........

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