So.....I have lots to tell but will try to hit the high ( and low) points only for now. This week has been really difficult. There have been streaks of so much sleeping and grogginess that I really couldn't tell you anything about them. I consider those the good parts. I have continued to need the nausea medicine to fight the effects of the narcotics. Ugh. And, since I have tried to keep it pretty much real here....I don't even know where to start on the topic of toileting.....and I don't mean #1. Let's just say my pre-emptive strike with the prune juice was a massive FAIL. After several other FAILS in that very delicate department (which by the way is closely linked with your chest whether you have ever thought about it or not), we finally had some progress and life got a little better.
I hate the way the narcotics make me feel. Really, really drugged. Crazy dreams. BUT...I think we made a critical error in trying to "wean" me off of them too soon. Crazy or not, I need to have my pain under control. Sometime around Monday we (Chris and my mom, with my blessing) began cutting the doses of narcotics and continuing the supplements of big doses of ibuprofen in between (So I was taking something every 3 hours). That is when I got really grouchy (so I was told), really emotional (even more than I already was) and really agitated with the constant discomfort. In case it wasn't clear from the last post, the drains run from the middle of my armpit (special little incision just for them) and hang outside my body for several feet and empty into the little drain pouch. The drain goes at least 6 inches inside my body and is held in place with a stitch. Did I mention how uncomfortable they are? Chris dutifully "milks" these every 8 hours and writes down the amount in each drain. And the expanders in my chest made their presence known a lot more. I didn't really notice them much for several days. Now, I am constantly aware of them and I do not like the way they feel. Remember during the surgery, they separated my chest muscle from the chest wall, laid the expander directly on the chest wall then covered it back with my chest muscle. Ouch. There is a little saline in the expander and after I have done a lot more healing then they will add a little more saline to the expander until I get to the size that I want to be. Then, there will be a final surgery to take out the expander and put in the real implant (that will feel less rough and more "natural" than the expander.)
Anyway - it has been rough going, and I so appreciate my mom picking up kids from school, my friend and neighbor Susan for taking them to school, my mom for dealing with homework and dinner on nights when friends haven't provided dinner. I somehow underestimated this surgery, and I so wish I hadn't done that. Everything else about this cancer, I thought would be worse than it really was. In this case, I have a friend who had this last year and she seemed to breeze through it (though i know she didn't actually breeze, I somehow didn't think logically about it all, and how different our circumstances were, etc.) and for several reasons I underestimated this surgery. My bad, for sure.
So yesterday we saw the plastic surgeon again and he removed 2 drains. Prior to that we spent time at the Cancer Center for another Herceptin infusion. Back to the plastic surgeon....Oh my goodness it hurt. Hurt a lot, but it was over with quickly. We left on speaking terms, so that was good. :) He saw the one on each side that was secreting the smallest amount of fluid, and cut the stitch right there (ouch!) and then told me to count to 3 and on 3 to blow out really hard. I did it and on 3 he yanked hard and the 6-7 inches of the tube that were inside my chest came out. My mother reported all of this because I was laying flat on my back trying to breathe and seeing stars. It took me a few minutes to come to my senses after that. Really big ouch. It hurt enough for him to remove all of the dressings. Now I have a much smaller dressing over the incision in the side of my breast and over where my nipple used to be, as well as a smaller dressing under each arm. I have an appt for next Thursday to hopefully get the rest of the drains out. Dr. Woods heard my issues with the narcotic and switched me back to something they had me on in the hospital....Toradol. You cannot be on it for long, but it takes away the crazy and it helps with the pain, so I am feeling a little better today. I am taking it every six hours with ibuprofen also every six hours but at the halfway mark of the Toradol. The pain has now become more of a pressure that I feel on my chest. A constant pressure and discomfort. I still don't like it, but I can live with it.
My dad wasn't feeling well and so he had to go home yesterday and now today my mom left. When faced with the fact of about 2 more weeks of needing real household help, we decided to take my wonderful mother-in-law up on her offer, and so she and Chris' dad are flying out on Sunday to help next week. The doctor said I should "make the turn" next week so I am counting on that. Sorry I haven't been social, or even really returned calls and emails. I am doing my best to get through the day, and that has been involving sleeping, taking med or talking with my mom, or distracting my mind with TV. I know I could have used this time to enlighten my brain with something intelligent or to do a good Bible study (my original plan), but honestly my eyes have been so bad through the chemo that I can't see very well up close, even with my glasses, and I really was looking for more of a quick and easy escape that TV offers. Plus, TV puts me to sleep...all the better.
That's all I have for now. I am trying to keep my chin up. Yes, it's the home stretch. I haven't even really mourned the loss of my breasts the way I thought I would because of all of this pain, so maybe that is a blessing in disguise?!? Sigh....I have no idea. The good news is I can type a little more. I will try to update again before too long. Thanks as always for the well wishes, prayers and happy thoughts. Keep them coming!!
Friday, January 30, 2015
Wednesday, January 28, 2015
Post Surgery Update
I had intended to update the blog the night before the surgery, but I got too busy and it got too late and so it didn't happen. I will try to give the play-by-play, since that is how I prefer to hear stories. Sorry to those of you who are more big picture people. I'll go ahead and cut to the chase for you....I'm fine. :)
My alarm went off at 4:45 last Wednesday morning, and though I didn't really have much to do, I wanted to be able to move around without being in a rush and make sure Chris had what he needed. I took a pretty long shower, knowing that it was going to be my last in several days. I was really bummed that I couldn't have my cup of coffee, but I knew better than to break a rule like that (no drinking or eating after midnight). I was instructed to remove all nail polish, jewelry, makeup, piercings, etc. before arrival at the hospital, and to wear something comfortable. It doesn't take long to get ready under those instructions! Right before we left at 5:30, I went ahead and took an Ativan with the tiniest swig of water (which I had specific permission from the anesthesiologist to do.) The Ativan helps me calm down, shake less and just mellow out a little. I got to use my new Vera Bradley duffel bag for my robe and slippers, change of clothes for Chris, etc., but I made sure that we had another bag with snacks for Chris, my lip balm, glasses case, current prescriptions, etc. I wore The Ariel because as usual, she was way faster to deal with. And I couldn't resist a good swipe of face powder and tinted lip gloss to face the day......I was prepared to defend my position if asked (how those items don't really count as "real make up").
We checked in a the McDonnell Surgical Center right at 6:00AM, and after a little bit of paperwork, we were called back to get going. Chris helped me change into the lovely hospital gown, this time I was told to open in the back (versus the last several appointments where it needed to open in the front) , and I had to put on the XXL no slip hospital socks. I was pretty sure I already knew the answer, but I had to ask anyway. Was I going to be allowed to wear my wig into surgery, or no? The nurse said I could wear it a little longer, but then take it off right before surgery, as we were moving into the OR. I thought.....this is silly....I am about to get a bilateral mastectomy....i need to not worry about the wig. So I took it off and put it in the green plastic bag that held my other clothing for Chris to keep up with. I had brought my favorite sleeping cap along for "just in case" and honestly, I was glad to get the wig off and to just be comfortable. So, during this post you will get to see your first glimpse of me without some form of hair, unless you are one of the "lucky few" who has been there for some procedure or another. :)
I was in the same place where they did pre-op before my lumpectomy, so I liked that little bit of familiarity. I was put in a comfy bed with warm covers, and all of the nurses began coming around with introductions. Muriel was the main check in nurse who had to get my IV started, but after she finished her basic questions, the anesthesiologist came in to talk and he was a huge distraction to me while Muriel started the IV. I really didn't like where she was doing it.....on the top of my hand (vs. in the crook of my elbow), but she said this would allow a lot more range of motion for my arm/hand. She sprayed it (I think) with a numbing agent and I didn't feel a thing when she started the IV. Big yay for that. At that point, I was sort of thinking that the hardest part is over. I forgot to mention....Chris had to leave before they started the IV. I was under the impression at the time that he was going to come back before the surgery, but according to him he never did.
After Dr. Gilli and his assistant explained the nerve block they would use, then Dr. Barber, my general surgeon, came in and talked with me, said he has been praying for me and he put his initials in Sharpie on both my right and left shoulders, with a 'yes,' as a reminder to him during surgery that both breasts are a yes. I had to explain in my own words to another nurse what I thought was happening that day, just to make sure that I really WAS aware of what was about to happen and to ensure no surprises. Finally, Dr. Woods, my plastic surgeon, came in (I heard the nurses referring to them as the dynamic duo...that made me smile). Dr. Woods had me hang my feet off the side of the bed and he drew all over my chest, freestyle. I attempted to joke with him about how this must be the "art" part of the science. I think he laughed. Not sure. We revisited the decision to have my nipples removed, but spare the aureola (skin around the nipple). This was an easy decision since my cancer was in the milk ducts, and even though we had theoretically already gotten all of the Stage I and Stage II cancer, there remained a lot of Stage 0 cancer (in situ) in my milk ducts that could at any time "activate" and start growing to a more scary cancer, so again....easy decision.
At this point I had the blood pressure cuff attached to my left arm and it was squeezing every few minutes. For some reason, every time it squeezed it hurt my IV. The nurses speculated that maybe it was just a small vein, and it was a pretty large needle. Of course I also had the little finger cuff on my finger that I think was measuring oxygen levels. Then they put the compression cuffs on both of my legs, so that they would be squeezed throughout surgery to prevent blood clots. They joked about getting the full spa treatment and I remember liking the calf squeezing cuffs.
Finally they were ready to roll me out of there and to the OR. The anesthesiologist had given me at least two shots of "feel good" med in my IV at this point (that burned like crazy in my vein). I had imagined being really emotional rolling away to the OR, but I wasn't. I remember it felt like a long "roll" to the OR. I was trying to read the signs along the way. I remember passing Labor and Delivery and thinking "awwwwww......babies....wish I could see the babies......." then it felt like we went through so many double metal doors that said Do Not Enter. Finally, we arrived and the OR was what I imagined.....super, super bright white. I had to shift from the rolling bed I was on to the bed in the OR. The nurse told me to just inch my bottom over a little at a time, then I had to assume the T position just like for the C sections. My arms were spread out and I believe strapped down on the two little sections of the bed/table that jut out for your arms. And really, that is the last thing I remember. I still feel a little annoyed that I don't have any more memory from the OR, and that I didn't have the conversation about, "now we're about to start, let's count backwards," etc. Maybe I had the conversation and I just don't remember it. It is on my mental list of things to ask, anyway. Chris thinks it's silly that I care at all, but I can't help it, I do.
The
next thing I know, I am whispering for Chris. I was whispering because
my throat was completely dry...as in no liquid at all. I had had a
tube down my throat for 5 hours. I still have some oxygen going in my
nose in this pic if you look closely. From what I understood I had been
asking for Chris from the time I came to, and I was so persistent with
it that they went ahead and brought him back to me before they normally
would have. Whoops. I don't like to be thought of as that patient who
won't stop talking, but I couldn't have been that annoying, right? I
mean, I could barely hear my own voice. Once I knew he was there I felt
a lot better. At least mentally. I couldn't believe it was over. He
was allowed to give me some ice chips, and that helped me so much.
Thank God for those ice chips.
I was really pretty delirious during this time, and from what I have pieced together, I came out of the surgery in a good amount of pain. In my uneducated opinion, it feels like something didn't go quite right with the pain management. Chris said they had to keep giving me additional shots of stuff to ease my pain. And I was nauseated. So they were giving me medicine for that. And I do remember one episode of a male nurse coming around and asking if I could wiggle my toes, which I could not. I sort of panicked about that (in hindsight...I have no good explanation for panicking, but I actually remember this). I began hyperventilating, which apparently is becoming my specialty. Again...so embarrassing, but in the moment I was doing my best. The nurse talked me through trying to calm down (with Chris' help) and gave me more drugs that knocked me out. So, the surgery had actually gotten underway at about 8:30AM, was over by about 1:30 or so, but we didn't get to our room until close to 6:00PM. I believe the "delay" was mainly trying to get my pain/nausea under control and having me calm down and get "comfortable." We went through the usual chills that I get (teeth chattering, body shaking) and then my blood pressure was really, really low.
Finally, I felt okay and we moved to our real room. Chris filled me in on what had happened on the "outside" while I was under. My precious friends Julie and Johanna came by to keep Chris company, and he said that it just worked out really well that there was a little overlap between visitors, but that the timing was really great so he could get a little one-on-one time, then a bit of the intro/overlap kind of visit. I was so thankful that his buddies Josh, Jason and Scott were able to come by and hang with him a bit also. He said that he had already started pacing the waiting room before my friends arrived, so once again, I so appreciate friends taking my not-so-subtle hints to stop by for a few minutes to break up his morning of waiting. After a couple of hours the general surgeon came out and said that his part was finished and that I had done great. After another 2 1/2 hours or so the plastic surgeon came out and said the same thing. Chris was relieved. No complications. Nothing unforeseen. Good news. Everything from both breasts was sent off to get tested and Dr. Barber had taken the lower fat pad with lymph nodes in it under my right arm. The pathology would tell how many nodes were removed, along with the results. The pathology results were expected in 3-4 business days.
But, I will go ahead and say....we received a phone call at home on Friday evening right at 6:30PM from Dr. Barber. My pathology was in and ALL OF THE RESULTS WERE CLEAN!!! They had ended up with 12 nodes out from under my right arm, and 100% of them were clear and healthy. The same with the breast tissue. I was so impressed and happy that they went ahead and called us on a Friday evening. That spoke volumes to me. And remember, the reason we were doing the mastectomy in the first place is because I did not have good margins of healthy tissue after the lumpectomy, and during the lumpectomy they found a bunch of Grade 0 cancer that was only going to cause problems later on. This was such a relief. And while we were SO DISAPPOINTED originally to find out the cancer had spread into my sentinel lymph node (meaning it had entered my bloodstream, making the chemo decision a no-brainer), I am SO HAPPY that none of my other nodes have had cancer in them. That means that that one sentinel node where we found the tumor was doing its job....filtering out the "junk" that does not belong. And it looks like the cancer stopped there as far as tumors go, and any cancer that may have been left "floating" in my lymphatic fluids or blood should have been killed by the chemo. So, to the best of my ability, I believe that I am cancer free at this moment in time, and I hope and pray that this will remain true.
The kiddos had wanted to visit me in the hospital, and we debated whether or not to do it, but Caroline was quite persuasive, and as it turns out, had had a pretty rough day at school. I basically said, yes, I think we need to see each other after the days that we have had. She had been allowed to use her teacher's phone to call Daddy while we were in the recovery room, and she had been crying off and on all morning at school. We waited for rush hour to die down a bit, but then Chris went to go pick up the kiddos for a quick visit, and my mom surprised me by coming along for the visit as well. They both handled it well, with my girl being a bit emotional, but I still think it was good for her to see that I was all right and in good spirits. Jonathan was basically fascinated by all the hospital gadgets and we couldn't keep up with all of his questions.
Prior to their arrival, I had to use the restroom for the first time
since surgery, and I was DREADING having to get up and out of the bed.
But I had been given very strict instructions not to even think about
trying it on my own, or even with my husband, and y'all know I'm a rule
follower. :) So I slowly angled my arm around to the nurse call button
on the side of the bed (this was before we had figured out there was a
"remote" dangling next to the bed that had all of the same buttons. It
took two nurses, and it helped to push the bed into its best upright
position first, but it HURT LIKE HADES to put any pressure on my arm and
through my chest (which you typically do when you are getting into and
out of bed, sitting down, breathing, etc.) We made it to the bathroom,
IV pole and all, and I was reminded of my time spent there for
childbirth....urinating into the bowl inside the toilet bowl, with
little measure marks on it. The last bit of my dignity that I might
have been clinging onto was swept away.....it was officially gone. I
was now a hospital patient, with a gown fully open in the back that no
one seemed to care about, sitting on the toilet with two people staring
at me, freezing and wanting to crawl back into bed except for the fact
it seemed so far away. Moving my arms in the direction of toilet paper
brought fresh rounds of searing pain, and by the time we made it back to
the bed one of the nurses had ordered a shot of morphine, and all I
could do was whisper thank you. I slept until the kiddos arrived and
was feeling no pain by then, so at least the timing on that worked out.
Poor Chris had to take the kids and my mom back to the house, then return to the hospital since he wanted to stay with me. That had been the plan. At least he was able to grab some dinner from home....dinner another sweet friend had provided. You know how nights in the hospital typically go...lots of interruptions to check vitals and then I kept having to use the bathroom. I had been pumped with plain IV fluids all day, then they were giving me something with a little energy in it (I thought they called it sugar water, but I'm really not sure), then they started me on IV antibiotics. Anyway, once I was allowed to drink water I drank a TON because I could NOT get that dry mouth feeling to go away. I was thankful I remembered to bring my saline nose spray and good lip balm because I used them constantly. And the night nurse was great, she was very patient every time I called her to use the bathroom and it really did get better after that first time. It still hurt a lot, but I was learning how to maneuver and we were figuring out how to get my pain under real control.
The next morning both surgeons came to visit, and I was expecting to go home that day.
Dr. Woods, the plastic surgeon, is my primary at this point. He asked a
few questions, examined me and had me get up. He wanted to know how
much walking I had done. I told him only to the bathroom a few times
through the night. I was still on IV pain medication, and that was the
deciding factor. He said I needed to get up and walk around the halls,
and get switched to oral pain med before he would let me go. Dr. Woods
had surgery scheduled that day up until at least 4:00, but he planned
to come back and check on me to give the final thumbs up or thumbs down
on whether I was going home that day. Our job was to learn how to deal
with the "drains" and figure out the pain medicine. We started with my
old friend Percocet (from the Shingles days). I had learned a little
about drains from reading about this procedure but mainly from my friend
Kati, who had the same procedure the prior year. I ended up with 2
drains on my right side and 3 on my left. Any time tissue is removed
from the body, the body wants to fill that space with fluid...it's a
natural response. However, filling with fluid can get really painful (I
experienced this after the lumpectomy when I had to go in and get some
fluid suctioned off that under my arm because the pressure was causing
so much pain.). So, drains are put in place to allow the fluid that
your body sends to the surgical site to "drain" out through a long
plastic tube and into a little plastic bottle. If you are easily
grossed out by blood and goo, please skip the next picture. I didn't
realize it beforehand, but a separate little incision was made under
each arm where the drain tubes come out. The tubes go inside my body
about 6 inches. That seems far to me! Each tube goes to a different
place inside. I have an extra tube on the right side because that's where I had the nodes removed.
Chris has his own box of gloves and little alcohol wipes that he uses to milk and empty the drains. It is important to push each drain in after emptying it, to create a little vacuum that helps pull the fluid out of my body and into the drain. He has a chart that he keeps of the amount of fluid that comes out of each. I see Dr. Woods again tomorrow (Thursday) and I am really hoping I can get the drains removed...if not all then some. Once again, thank goodness for my friend Kati, who is letting me use her "drain belt" from last year. Instead of pinning the drains to your pajamas, you can pin them to a simple belt, and it's a lifesaver in the shower and, for me, it just feels better to have the drains attached to the belt that I wear low on my hips, versus flopping around my shirt.
We walked around the hospital as instructed on Thursday, but I was denied permission to come home. It was the right call, I am sure. We were having a little trouble getting the pain pills right. We switched to a different codeine-type pain pill and that seemed to work better with a little less nausea. I insisted that Chris spend the night at home the second night. I was so very tired, I knew all I wanted was to sleep. My blood pressure had come back up finally into normal range. He was so exhausted from the night before...he needed the rest as much as I did. So, that is what we did and it all went well. He was back first thing in the morning, and Dr. Woods gave us permission to leave after breakfast and before lunch. Yay - we were discharged!
I
have more to write about being home for the last week, but that will
have to come later. I am very tired and my arms are aching. Thank you
for all of the prayers, encouragement and support. I will write more
before too long! Good Night!
My alarm went off at 4:45 last Wednesday morning, and though I didn't really have much to do, I wanted to be able to move around without being in a rush and make sure Chris had what he needed. I took a pretty long shower, knowing that it was going to be my last in several days. I was really bummed that I couldn't have my cup of coffee, but I knew better than to break a rule like that (no drinking or eating after midnight). I was instructed to remove all nail polish, jewelry, makeup, piercings, etc. before arrival at the hospital, and to wear something comfortable. It doesn't take long to get ready under those instructions! Right before we left at 5:30, I went ahead and took an Ativan with the tiniest swig of water (which I had specific permission from the anesthesiologist to do.) The Ativan helps me calm down, shake less and just mellow out a little. I got to use my new Vera Bradley duffel bag for my robe and slippers, change of clothes for Chris, etc., but I made sure that we had another bag with snacks for Chris, my lip balm, glasses case, current prescriptions, etc. I wore The Ariel because as usual, she was way faster to deal with. And I couldn't resist a good swipe of face powder and tinted lip gloss to face the day......I was prepared to defend my position if asked (how those items don't really count as "real make up").
 |
| Wearing comfy clothes, no food and no coffee, but feeling ready to get this show on the road! |
We checked in a the McDonnell Surgical Center right at 6:00AM, and after a little bit of paperwork, we were called back to get going. Chris helped me change into the lovely hospital gown, this time I was told to open in the back (versus the last several appointments where it needed to open in the front) , and I had to put on the XXL no slip hospital socks. I was pretty sure I already knew the answer, but I had to ask anyway. Was I going to be allowed to wear my wig into surgery, or no? The nurse said I could wear it a little longer, but then take it off right before surgery, as we were moving into the OR. I thought.....this is silly....I am about to get a bilateral mastectomy....i need to not worry about the wig. So I took it off and put it in the green plastic bag that held my other clothing for Chris to keep up with. I had brought my favorite sleeping cap along for "just in case" and honestly, I was glad to get the wig off and to just be comfortable. So, during this post you will get to see your first glimpse of me without some form of hair, unless you are one of the "lucky few" who has been there for some procedure or another. :)
I was in the same place where they did pre-op before my lumpectomy, so I liked that little bit of familiarity. I was put in a comfy bed with warm covers, and all of the nurses began coming around with introductions. Muriel was the main check in nurse who had to get my IV started, but after she finished her basic questions, the anesthesiologist came in to talk and he was a huge distraction to me while Muriel started the IV. I really didn't like where she was doing it.....on the top of my hand (vs. in the crook of my elbow), but she said this would allow a lot more range of motion for my arm/hand. She sprayed it (I think) with a numbing agent and I didn't feel a thing when she started the IV. Big yay for that. At that point, I was sort of thinking that the hardest part is over. I forgot to mention....Chris had to leave before they started the IV. I was under the impression at the time that he was going to come back before the surgery, but according to him he never did.
 | |
| I was warm and comfy, not really even missing my coffee. Ready to get going so that the dread would go away. |
After Dr. Gilli and his assistant explained the nerve block they would use, then Dr. Barber, my general surgeon, came in and talked with me, said he has been praying for me and he put his initials in Sharpie on both my right and left shoulders, with a 'yes,' as a reminder to him during surgery that both breasts are a yes. I had to explain in my own words to another nurse what I thought was happening that day, just to make sure that I really WAS aware of what was about to happen and to ensure no surprises. Finally, Dr. Woods, my plastic surgeon, came in (I heard the nurses referring to them as the dynamic duo...that made me smile). Dr. Woods had me hang my feet off the side of the bed and he drew all over my chest, freestyle. I attempted to joke with him about how this must be the "art" part of the science. I think he laughed. Not sure. We revisited the decision to have my nipples removed, but spare the aureola (skin around the nipple). This was an easy decision since my cancer was in the milk ducts, and even though we had theoretically already gotten all of the Stage I and Stage II cancer, there remained a lot of Stage 0 cancer (in situ) in my milk ducts that could at any time "activate" and start growing to a more scary cancer, so again....easy decision.
 |
| BB: Bill Barber, my surgeon. You can see my port in the picture, too. The port needs to stay because my Herceptin infusions will continue every three weeks until I have received it a full year, so until end of September 2015. |
At this point I had the blood pressure cuff attached to my left arm and it was squeezing every few minutes. For some reason, every time it squeezed it hurt my IV. The nurses speculated that maybe it was just a small vein, and it was a pretty large needle. Of course I also had the little finger cuff on my finger that I think was measuring oxygen levels. Then they put the compression cuffs on both of my legs, so that they would be squeezed throughout surgery to prevent blood clots. They joked about getting the full spa treatment and I remember liking the calf squeezing cuffs.
Finally they were ready to roll me out of there and to the OR. The anesthesiologist had given me at least two shots of "feel good" med in my IV at this point (that burned like crazy in my vein). I had imagined being really emotional rolling away to the OR, but I wasn't. I remember it felt like a long "roll" to the OR. I was trying to read the signs along the way. I remember passing Labor and Delivery and thinking "awwwwww......babies....wish I could see the babies......." then it felt like we went through so many double metal doors that said Do Not Enter. Finally, we arrived and the OR was what I imagined.....super, super bright white. I had to shift from the rolling bed I was on to the bed in the OR. The nurse told me to just inch my bottom over a little at a time, then I had to assume the T position just like for the C sections. My arms were spread out and I believe strapped down on the two little sections of the bed/table that jut out for your arms. And really, that is the last thing I remember. I still feel a little annoyed that I don't have any more memory from the OR, and that I didn't have the conversation about, "now we're about to start, let's count backwards," etc. Maybe I had the conversation and I just don't remember it. It is on my mental list of things to ask, anyway. Chris thinks it's silly that I care at all, but I can't help it, I do.
 |
| Here I am in back in the Recovery Room, where I was in and out of it for a long time. Note the nausea bag near my head. and the lovely silver shower cap that they had already removed from my head. |
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| I think this must be before they put my glasses back on my face. Wow - I look really out of it. Like I said, lots of drugs. |
I was really pretty delirious during this time, and from what I have pieced together, I came out of the surgery in a good amount of pain. In my uneducated opinion, it feels like something didn't go quite right with the pain management. Chris said they had to keep giving me additional shots of stuff to ease my pain. And I was nauseated. So they were giving me medicine for that. And I do remember one episode of a male nurse coming around and asking if I could wiggle my toes, which I could not. I sort of panicked about that (in hindsight...I have no good explanation for panicking, but I actually remember this). I began hyperventilating, which apparently is becoming my specialty. Again...so embarrassing, but in the moment I was doing my best. The nurse talked me through trying to calm down (with Chris' help) and gave me more drugs that knocked me out. So, the surgery had actually gotten underway at about 8:30AM, was over by about 1:30 or so, but we didn't get to our room until close to 6:00PM. I believe the "delay" was mainly trying to get my pain/nausea under control and having me calm down and get "comfortable." We went through the usual chills that I get (teeth chattering, body shaking) and then my blood pressure was really, really low.
 |
| I am just keeping it real here, folks. I was super nauseated for a while, but luckily I respond well to the nausea medication. |
Finally, I felt okay and we moved to our real room. Chris filled me in on what had happened on the "outside" while I was under. My precious friends Julie and Johanna came by to keep Chris company, and he said that it just worked out really well that there was a little overlap between visitors, but that the timing was really great so he could get a little one-on-one time, then a bit of the intro/overlap kind of visit. I was so thankful that his buddies Josh, Jason and Scott were able to come by and hang with him a bit also. He said that he had already started pacing the waiting room before my friends arrived, so once again, I so appreciate friends taking my not-so-subtle hints to stop by for a few minutes to break up his morning of waiting. After a couple of hours the general surgeon came out and said that his part was finished and that I had done great. After another 2 1/2 hours or so the plastic surgeon came out and said the same thing. Chris was relieved. No complications. Nothing unforeseen. Good news. Everything from both breasts was sent off to get tested and Dr. Barber had taken the lower fat pad with lymph nodes in it under my right arm. The pathology would tell how many nodes were removed, along with the results. The pathology results were expected in 3-4 business days.
But, I will go ahead and say....we received a phone call at home on Friday evening right at 6:30PM from Dr. Barber. My pathology was in and ALL OF THE RESULTS WERE CLEAN!!! They had ended up with 12 nodes out from under my right arm, and 100% of them were clear and healthy. The same with the breast tissue. I was so impressed and happy that they went ahead and called us on a Friday evening. That spoke volumes to me. And remember, the reason we were doing the mastectomy in the first place is because I did not have good margins of healthy tissue after the lumpectomy, and during the lumpectomy they found a bunch of Grade 0 cancer that was only going to cause problems later on. This was such a relief. And while we were SO DISAPPOINTED originally to find out the cancer had spread into my sentinel lymph node (meaning it had entered my bloodstream, making the chemo decision a no-brainer), I am SO HAPPY that none of my other nodes have had cancer in them. That means that that one sentinel node where we found the tumor was doing its job....filtering out the "junk" that does not belong. And it looks like the cancer stopped there as far as tumors go, and any cancer that may have been left "floating" in my lymphatic fluids or blood should have been killed by the chemo. So, to the best of my ability, I believe that I am cancer free at this moment in time, and I hope and pray that this will remain true.
The kiddos had wanted to visit me in the hospital, and we debated whether or not to do it, but Caroline was quite persuasive, and as it turns out, had had a pretty rough day at school. I basically said, yes, I think we need to see each other after the days that we have had. She had been allowed to use her teacher's phone to call Daddy while we were in the recovery room, and she had been crying off and on all morning at school. We waited for rush hour to die down a bit, but then Chris went to go pick up the kiddos for a quick visit, and my mom surprised me by coming along for the visit as well. They both handled it well, with my girl being a bit emotional, but I still think it was good for her to see that I was all right and in good spirits. Jonathan was basically fascinated by all the hospital gadgets and we couldn't keep up with all of his questions.
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| First Night - visit from my beloved family. This was after the morphine. |
Poor Chris had to take the kids and my mom back to the house, then return to the hospital since he wanted to stay with me. That had been the plan. At least he was able to grab some dinner from home....dinner another sweet friend had provided. You know how nights in the hospital typically go...lots of interruptions to check vitals and then I kept having to use the bathroom. I had been pumped with plain IV fluids all day, then they were giving me something with a little energy in it (I thought they called it sugar water, but I'm really not sure), then they started me on IV antibiotics. Anyway, once I was allowed to drink water I drank a TON because I could NOT get that dry mouth feeling to go away. I was thankful I remembered to bring my saline nose spray and good lip balm because I used them constantly. And the night nurse was great, she was very patient every time I called her to use the bathroom and it really did get better after that first time. It still hurt a lot, but I was learning how to maneuver and we were figuring out how to get my pain under real control.
 | |
| The chair folded out flat into some semblance of a bed. But Chris is 6'5" and it was most definitely not made for anyone near his size. Poor guy. I was thankful he was there, though, and I believe he was where he needed to be as well. |
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| Chris had a couple of lessons in "milking" the drains to make sure there were no blood clots. This has to be done every 8 hours, even now, a week later. |
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| My right side, with the drains safety pinned to my hospital gown. This was very important because these tubes are sewn into my body, and if they are left to hang, the weight of them not only hurts but can damage the incision. |
Chris has his own box of gloves and little alcohol wipes that he uses to milk and empty the drains. It is important to push each drain in after emptying it, to create a little vacuum that helps pull the fluid out of my body and into the drain. He has a chart that he keeps of the amount of fluid that comes out of each. I see Dr. Woods again tomorrow (Thursday) and I am really hoping I can get the drains removed...if not all then some. Once again, thank goodness for my friend Kati, who is letting me use her "drain belt" from last year. Instead of pinning the drains to your pajamas, you can pin them to a simple belt, and it's a lifesaver in the shower and, for me, it just feels better to have the drains attached to the belt that I wear low on my hips, versus flopping around my shirt.
We walked around the hospital as instructed on Thursday, but I was denied permission to come home. It was the right call, I am sure. We were having a little trouble getting the pain pills right. We switched to a different codeine-type pain pill and that seemed to work better with a little less nausea. I insisted that Chris spend the night at home the second night. I was so very tired, I knew all I wanted was to sleep. My blood pressure had come back up finally into normal range. He was so exhausted from the night before...he needed the rest as much as I did. So, that is what we did and it all went well. He was back first thing in the morning, and Dr. Woods gave us permission to leave after breakfast and before lunch. Yay - we were discharged!
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| Wearing same outfit I wore to the hospital, but I only had it on for about an hour the first time! And no, I had absolutely no energy to deal with thoughts of a wig, contacts or makeup. Happy to be going home! |
Friday, January 16, 2015
The Dance
I just feel like writing a little bit this morning. Reality is really setting in but I am feeling less stressed about the upcoming surgery and sort of just ready to get it over with. I titled this post "The Dance" because for some reason after Chris took the kids to school today I was reminded, out of the clear blue, about a link that a couple of people sent me and that I had seen on Facebook. However, at the time the link was going viral, I had never clicked on it, knowing that it would bring on tears, etc. and I really didn't need any more of those. I knew the link was a clip from a Garth Brooks concert where a lady held up a sign reading "Chemo this morning, Garth tonight" or something to that effect. Maybe I was just too close to chemo at the time. Anyway, that clip was brought to mind this morning and so I looked it up and watched it. I remember LOVING that song...it's a really great song with sweet lyrics. Yes, of course you guessed it, the tears were flowing, but it felt more like happy tears, or at least therapeutic tears, not the "ugly, heaving cry" or the "I feel so sorry for myself" tears. It was more of a moment of thinking....wow...there are SO MANY women out there going through this and it's like I joined a second sorority. This was a new feeling. It has been feeling like as a cancer person I have been outcast, not by friends or anything, but more by life. Damaged goods. But this morning I have a feeling that is more like I have crossed some invisible line and joined a new group that does not exclude my old group but that makes me part of something much bigger than myself...this huge group of women fighting this same fight, feeling these same feelings (or at least similar). I guess it just felt for a moment like, so many other women are going through what I am going through, and many have it SO MUCH WORSE, so just put your head down Rebekah and get to work. It really has brought me to my knees and as a Christian, maybe this is the trial that was chosen for me to prove my faithfulness? Maybe there are more ahead...I don't know. But I know that this was no surprise to God, and it is part of His plan, and I am in the process of accepting that and accepting that I don't have to "understand" everything. Here is the link for anyone who hasn't already seen it.
http://www.kare11.com/story/news/local/2014/11/08/garth-brooks-serenades-fan-with-cancer-gives-her-guitar/18734547/
Speaking of country music, I have started listening to it a little bit again. This is all very recent. I remember when we first moved to Texas back in 1986 I thought country music was ridiculous, other than the really old country music that my dad would listen to that I loved. But, Texas has a way of growing on a person quickly, and before I knew it, I was hooked (along with my good ole rock & roll, too of course....I loved every hair band that was out there at the time). I guess I am really dating myself here. :) Anyway, Garth, Alan Jackson, Brooks & Dunn, Vince Gill, Trisha Yearwood, Clint Black and of course George Strait....he had a house not too far from us in San Antonio. This all served me well going to college in Fort Worth, where boot scootin was standard Friday night fun. But then a time came when it was hard to listen to country music....I mean it DOES generally fall into one of a few categories.....love/heartbreak/how you will handle either or trucks/alcohol/nostalgia for things that aren't there anymore. I was going through some things in my life at the time that made me want to put some distance between myself and country music and all of its associations, so I did. And it has stayed that way for almost 20 years. There have been a few moments of nostalgia when I have gone back and listened to old songs that I already knew. Anyway....maybe it is Georgia having its own influence on me after 11 years of living here, but I am reacquainting myself with some country music, mainly the more traditional stuff and not this hybrid country rock. But I recently remembered one of the things I liked most about country music....the stories that they tell. And I relate so well to music that it has been a nice and welcome release for me to just listen to these songs in the car and have an opportunity to shed a tear if I feel like it over the song. The same applies to church and the worship music. I never like to be late to church because then you miss the music, which is my favorite part. I always feel a little guilty saying that I like the music better than the teaching, but I just love the way music can reach inside unlike anything else. Maybe that's another reason I am exploring new radio stations. Listening to The Fish with the kids (it's a family friendly Christian music station in ATL) gets to me more and more these days, where I feel like each song is speaking to me and I have a hard time holding back the tears. Gosh...I wonder how many times I have written tears in this post?? Yikes...I am rambling and it's definitely time for a new topic.
Yesterday I received a phone call from my oncologist's office. At the suggestion of the nutritionist, we had asked the doctor to include a look at my Vitamin D levels in my latest blood work from last Friday. The nutritionist said that some studies have shown a link between low Vitamin D levels and breast cancer. Well, my Vitamin D level came back really low. It is so low that they put me on a prescription, Drisdol, immediately to bring it up to normal range. I think that is about 50,000 units of Vitamin D and I take it once a week (thank goodness because you might remember I DO NOT swallow pills well and this one cannot be crushed or cut up...took me about 15 minutes of gagging and chocking last night to get it down...pathetic and embarrassing, I know). I asked her why I couldn't just take the over the counter Vitamin D supplements, and the nurse said it would take way too long and it might never get to the level it needed to be on those supplements. Chris and I find this all interesting and a little concerning. At first I was unhappy that my oncologist, in whom I have had the greatest confidence and who has been personally endorsed by several friends and doctors, didn't check my Vitamin D level on his own. But then we calmed down and realized, once again, that this is half art and half science, and that our doctor is following proven protocol, and this Vitamin D link is a theory with data to back it up, but it is not (yet??) considered "protocol." Regardless, it makes sense to get my levels all within normal range, so we are on it.
As far as my new eating plan....so far I have been a rock star. I stocked up at Costco on so many organic greens you would have thought I am starting a little business out of the house. I have been putting their Kale, Chard, Spinach blend in our smoothies with a banana and the Triple Berry Blend and some Green Machine Naked Juice and the kids have no idea. As long as it doesn't look green then they are fine. So funny. My sweet friend Johanna just introduced me to protein powder...a good organic kind and I added it this morning. That is one problem I have had with the eating plan....getting a lot of protein. I don't like eggs and I'm not supposed to eat a lot of meat, so it's beans and more beans, and I've been eating lots of Greek yogurt. But the plastic surgeon had recommended doubling my protein intake going into surgery to help with the healing, and that is the one goal I have been missing. I hope this protein powder helps. I thought that eating 1300 calories a day would make me starve, but drinking all of the additional liquid and eating so many vegetables is keeping me full somehow. So far so good, but we are less than one week in!!
I walked 2 miles with friends one day this week, and we walked pretty aggressively for me in my current state of fitness. As all who know me well know, I am a fast walker by nature, and though I have never been a fitness queen, I have usually had a good endurance (I mean, the 60 minute spin class was my favorite at the gym!), but the hill leading up and out of our section of the neighborhood about knocked me flat. I was glad to be with friends or I may have stopped, but I just said, you guys talk and we slowed down but kept moving. The other days I have been doing the stairs in the house (it has been yucky outside)....going from the basement all the way to the 2nd floor and back again for 15 minutes straight. That is really hard, too, but Chris and the kids and I form a train with me leading the way and we get it done. I love how they want to help. And believe me, when your two kiddos and hubby are behind you saying don't stop, keep going, you keep going. What is wrong with me?? Here come the tears again!! Just thinking about it and how much I love them!!
So, this weekend I will try to wrap up my list of things to get done before the surgery. I bought new slippers, have several pairs of button front pajamas...did I mention that 2 drains will be attached to each breast?? Ugh! Lots of pillows...need to wash my robe, definitely taking my own pillow to the hospital, and a friend just sent me a list I hadn't seen about a few other essentials to take to the hospital...lip balm, body wipes (guess I won't be showering for a few days...didn't think about that), and I would have never thought of this, but I plan to charge my electric toothbrush. I know from having the sentinel nodes out how sore my arm was, and if this is worse than that then the electric toothbrush make so much sense. Oh, and I still have a dining table full of Christmas decor. Most is put away but I have been ignoring the final bunch of stuff.
So, let me get to work. Thanks for reading my ramblings. Don't forget...I said this is a journal and not only cancer-specific updates!! I am feeling SO MUCH better. I know my fitness level isn't back to where it was before chemo, and the hormonal side effects of chemo remain just the same and may last up to a year, but the neuropathy is better (not gone completely) but the big shooting aches and pains are gone and my MOOD is so much better. My mind feels freer. My nose is still drippy every day, but that seems so minor. My white blood count just crossed into normal range (yay!!) even though my lymphocytes remain below normal (showing my immune system hasn't bounced all the way back yet but it's on its way). My red blood count remains a little below normal, but improving. This means I remain anemic, but it's improving. My hemoglobin (oxygen in blood) numbers moved up again, so another piece of good news. Have a great weekend! I plan to post one more time before the surgery, so stay tuned.
http://www.kare11.com/story/news/local/2014/11/08/garth-brooks-serenades-fan-with-cancer-gives-her-guitar/18734547/
Speaking of country music, I have started listening to it a little bit again. This is all very recent. I remember when we first moved to Texas back in 1986 I thought country music was ridiculous, other than the really old country music that my dad would listen to that I loved. But, Texas has a way of growing on a person quickly, and before I knew it, I was hooked (along with my good ole rock & roll, too of course....I loved every hair band that was out there at the time). I guess I am really dating myself here. :) Anyway, Garth, Alan Jackson, Brooks & Dunn, Vince Gill, Trisha Yearwood, Clint Black and of course George Strait....he had a house not too far from us in San Antonio. This all served me well going to college in Fort Worth, where boot scootin was standard Friday night fun. But then a time came when it was hard to listen to country music....I mean it DOES generally fall into one of a few categories.....love/heartbreak/how you will handle either or trucks/alcohol/nostalgia for things that aren't there anymore. I was going through some things in my life at the time that made me want to put some distance between myself and country music and all of its associations, so I did. And it has stayed that way for almost 20 years. There have been a few moments of nostalgia when I have gone back and listened to old songs that I already knew. Anyway....maybe it is Georgia having its own influence on me after 11 years of living here, but I am reacquainting myself with some country music, mainly the more traditional stuff and not this hybrid country rock. But I recently remembered one of the things I liked most about country music....the stories that they tell. And I relate so well to music that it has been a nice and welcome release for me to just listen to these songs in the car and have an opportunity to shed a tear if I feel like it over the song. The same applies to church and the worship music. I never like to be late to church because then you miss the music, which is my favorite part. I always feel a little guilty saying that I like the music better than the teaching, but I just love the way music can reach inside unlike anything else. Maybe that's another reason I am exploring new radio stations. Listening to The Fish with the kids (it's a family friendly Christian music station in ATL) gets to me more and more these days, where I feel like each song is speaking to me and I have a hard time holding back the tears. Gosh...I wonder how many times I have written tears in this post?? Yikes...I am rambling and it's definitely time for a new topic.
Yesterday I received a phone call from my oncologist's office. At the suggestion of the nutritionist, we had asked the doctor to include a look at my Vitamin D levels in my latest blood work from last Friday. The nutritionist said that some studies have shown a link between low Vitamin D levels and breast cancer. Well, my Vitamin D level came back really low. It is so low that they put me on a prescription, Drisdol, immediately to bring it up to normal range. I think that is about 50,000 units of Vitamin D and I take it once a week (thank goodness because you might remember I DO NOT swallow pills well and this one cannot be crushed or cut up...took me about 15 minutes of gagging and chocking last night to get it down...pathetic and embarrassing, I know). I asked her why I couldn't just take the over the counter Vitamin D supplements, and the nurse said it would take way too long and it might never get to the level it needed to be on those supplements. Chris and I find this all interesting and a little concerning. At first I was unhappy that my oncologist, in whom I have had the greatest confidence and who has been personally endorsed by several friends and doctors, didn't check my Vitamin D level on his own. But then we calmed down and realized, once again, that this is half art and half science, and that our doctor is following proven protocol, and this Vitamin D link is a theory with data to back it up, but it is not (yet??) considered "protocol." Regardless, it makes sense to get my levels all within normal range, so we are on it.
As far as my new eating plan....so far I have been a rock star. I stocked up at Costco on so many organic greens you would have thought I am starting a little business out of the house. I have been putting their Kale, Chard, Spinach blend in our smoothies with a banana and the Triple Berry Blend and some Green Machine Naked Juice and the kids have no idea. As long as it doesn't look green then they are fine. So funny. My sweet friend Johanna just introduced me to protein powder...a good organic kind and I added it this morning. That is one problem I have had with the eating plan....getting a lot of protein. I don't like eggs and I'm not supposed to eat a lot of meat, so it's beans and more beans, and I've been eating lots of Greek yogurt. But the plastic surgeon had recommended doubling my protein intake going into surgery to help with the healing, and that is the one goal I have been missing. I hope this protein powder helps. I thought that eating 1300 calories a day would make me starve, but drinking all of the additional liquid and eating so many vegetables is keeping me full somehow. So far so good, but we are less than one week in!!
I walked 2 miles with friends one day this week, and we walked pretty aggressively for me in my current state of fitness. As all who know me well know, I am a fast walker by nature, and though I have never been a fitness queen, I have usually had a good endurance (I mean, the 60 minute spin class was my favorite at the gym!), but the hill leading up and out of our section of the neighborhood about knocked me flat. I was glad to be with friends or I may have stopped, but I just said, you guys talk and we slowed down but kept moving. The other days I have been doing the stairs in the house (it has been yucky outside)....going from the basement all the way to the 2nd floor and back again for 15 minutes straight. That is really hard, too, but Chris and the kids and I form a train with me leading the way and we get it done. I love how they want to help. And believe me, when your two kiddos and hubby are behind you saying don't stop, keep going, you keep going. What is wrong with me?? Here come the tears again!! Just thinking about it and how much I love them!!
So, this weekend I will try to wrap up my list of things to get done before the surgery. I bought new slippers, have several pairs of button front pajamas...did I mention that 2 drains will be attached to each breast?? Ugh! Lots of pillows...need to wash my robe, definitely taking my own pillow to the hospital, and a friend just sent me a list I hadn't seen about a few other essentials to take to the hospital...lip balm, body wipes (guess I won't be showering for a few days...didn't think about that), and I would have never thought of this, but I plan to charge my electric toothbrush. I know from having the sentinel nodes out how sore my arm was, and if this is worse than that then the electric toothbrush make so much sense. Oh, and I still have a dining table full of Christmas decor. Most is put away but I have been ignoring the final bunch of stuff.
So, let me get to work. Thanks for reading my ramblings. Don't forget...I said this is a journal and not only cancer-specific updates!! I am feeling SO MUCH better. I know my fitness level isn't back to where it was before chemo, and the hormonal side effects of chemo remain just the same and may last up to a year, but the neuropathy is better (not gone completely) but the big shooting aches and pains are gone and my MOOD is so much better. My mind feels freer. My nose is still drippy every day, but that seems so minor. My white blood count just crossed into normal range (yay!!) even though my lymphocytes remain below normal (showing my immune system hasn't bounced all the way back yet but it's on its way). My red blood count remains a little below normal, but improving. This means I remain anemic, but it's improving. My hemoglobin (oxygen in blood) numbers moved up again, so another piece of good news. Have a great weekend! I plan to post one more time before the surgery, so stay tuned.
Monday, January 12, 2015
Getting ready for OPB
Hello everyone! I have finished all of the appointments one day after the other and I have one more remaining, this Wednesday, before surgery. I will try to provide a little update on each.
The echocardiogram did not require an IV this time (with the dye contrast), so I was very happy about that. No extra needles. I received the results on Friday and my heart looks good...no weaknesses detected at this time. I always ask the technicians if everything looks ok, and they always have the same answer...."I really can't give you the results, they need to come from the doctor"....but this one was funny. She said that same thing, but ended with"well......if I let you leave the hospital you should take that as a good sign." I thought that was good. Maybe funnier in the moment.
On Thursday I met with the Nutritionist at the Cancer Wellness Center, and Chris joined. That was really interesting. That is an area that has been causing me anxiety and lots of confusion. I have heard and read so many different things, then I personally know a couple of people who are pictures of "health" with regular exercise and good eating, then cancer strikes, and strikes again. I don't want to go on a big tangent right now, but suffice it to say that my general attitude is fear that cancer will come back. In many ways I am scared to be off chemo. I don't know what brought this cancer on, and though we have learned quite a bit of specific "stuff" about it, I am scared that it will come back, somewhere else in my body. Even though I will be followed carefully during this first year, and I continue Herceptin for 40 weeks after chemo (so my blood will be checked regularly), my biggest questions have been, what can I DO to prevent cancer recurring? I knew that exercise and a healthy diet play a big to giant (not sure exactly how big) role, but with regard to food.....what specifics are there? This nutritionist gave me some solid tips and so Chris and I are going to go with them, since it is mainly in line with things we were reading but also it is one source who has studies this topic professionally and taken info from multiple sources and put it out there with Piedmont's stamp of approval, so that makes things easier...at least as a place to start.
So....since I know many of you will ask, here is what she told me....as a breast cancer survivor with a cancer that is NOT hormone driven; it is driven by protein, the HER2 protein. This would be a little different for others. For example, other breast cancer survivors might be told to switch to soy milk, while I have been told to avoid it, and try almond milk.
1. Exercise - 6 days a week for 30 min (brisk walking is enough)
2. Eat 5 servings of fruits & veg (yellow, orange & deep green) a day. Increase consumption of cruciferous veg to at MINIMUM 1 cup per day of cooked or lightly steamed veg. (Kale, Cabbage, Broccoli, Collard Greens, Turnips, Brussels Sprouts, Cauliflower, Rutabaga...a few others)
3. Maintain healthy weight. She told me lose the "chemo weight" after I recover from surgery, which of course I had planned to do anyway. But, having a person in the cancer center tell you to lose the weight means something. Did I mention I gained 10-15 pounds, depending on the day? I have lost 3 so far. A lot of it is water retention, I know. My fingers are puffy. Anyway....I am highly motivated so I don't anticipate this being a problem.
4. Limit red meat to 2 servings per week (yes, this includes pork), and avoid all processed meats (sausage, deli meats, smoked meats, bacon). Try to make meat NOT the main focus of a meal. If eating poultry, try to increase its quality (organic, etc.).
5. Avoid charbroiled and overcooked (charred) foods. There is a lot of explanation on this one about HCAs forming at high heat....which are carcinogenic.
6. Aim for 1400-1500 mg of calcium each day and 1100IU of Vitamin D. There is a big association in breast cancer patients of low levels of Vitamin D and recurrence.
7. Drink 3-5 cups of green tea daily.
8. Avoid alcohol. Even small amounts matter. Very sad about this one. :( If I choose to drink occasionally, she recommends a light beer or red wine, and to supplement with folic acid.
9. Dietary fat should be decreased to 15-20% of total daily calories. She calculated 28 grams of fat a day for me. Breast cancer thrives on fat. I just started really tracking my eating, and as she predicted, this is going to be really difficult. But....we will get there. I have always prided myself on not "dieting" and whenever I knew I had gained weight then I just decreased calories to get my pants to fit right again, or increased activity, etc. Now, to have to pay so much attention to food, goes against my grain and does not make me happy, but at least it IS interesting, and I know it DOES make a difference, and I don't really feel like I have a choice at this point. I am getting over it. :)
The 3 most important are numbers 1, 2 and 9.
Today I met with the lymphedema specialist and my arms were measured and I was fitted for a compression sleeve and glove. I will use those in the hospital and then have them if there is a problem later on. The woman was really great. I don't know exactly what happened, but she was talking about breast cancer and the journey and asking if I had "talked" to anyone, like a counselor. I said no, and she was so warm, she grabbed my hands and said that I really needed to do that, and I don't remember what she said after that but I felt the tears start rolling down my cheeks. I even made the poor lady cry. I have found myself to be so emotional over the last week. I am guessing it is all of these appointments where my/our attention is hyper focused on the cancer again. My mind is reeling with new info. I am dreading the surgery. I cannot really explain it well, but I am still having trouble "accepting" that this is really happening and that I have to "live" with this for the rest of my life. I so want to go back to the feeling I had before, of walking around and feeling so very fortunate, blessed, happy, light, free. I know we are still all of those things, but it feels different and I prefer the old feeling. I hope that makes sense. Yes, I am working on accepting the "new normal"... a term I already dislike but it really is the best description I suppose.
I don't want to end on a down note, but I have to go pick up my sweet Caroline. My final appointment before the surgery is this Wednesday for pre op with the plastic surgeon. I will add more later! Thank you for continuing to read and encourage!!
The echocardiogram did not require an IV this time (with the dye contrast), so I was very happy about that. No extra needles. I received the results on Friday and my heart looks good...no weaknesses detected at this time. I always ask the technicians if everything looks ok, and they always have the same answer...."I really can't give you the results, they need to come from the doctor"....but this one was funny. She said that same thing, but ended with"well......if I let you leave the hospital you should take that as a good sign." I thought that was good. Maybe funnier in the moment.
On Thursday I met with the Nutritionist at the Cancer Wellness Center, and Chris joined. That was really interesting. That is an area that has been causing me anxiety and lots of confusion. I have heard and read so many different things, then I personally know a couple of people who are pictures of "health" with regular exercise and good eating, then cancer strikes, and strikes again. I don't want to go on a big tangent right now, but suffice it to say that my general attitude is fear that cancer will come back. In many ways I am scared to be off chemo. I don't know what brought this cancer on, and though we have learned quite a bit of specific "stuff" about it, I am scared that it will come back, somewhere else in my body. Even though I will be followed carefully during this first year, and I continue Herceptin for 40 weeks after chemo (so my blood will be checked regularly), my biggest questions have been, what can I DO to prevent cancer recurring? I knew that exercise and a healthy diet play a big to giant (not sure exactly how big) role, but with regard to food.....what specifics are there? This nutritionist gave me some solid tips and so Chris and I are going to go with them, since it is mainly in line with things we were reading but also it is one source who has studies this topic professionally and taken info from multiple sources and put it out there with Piedmont's stamp of approval, so that makes things easier...at least as a place to start.
So....since I know many of you will ask, here is what she told me....as a breast cancer survivor with a cancer that is NOT hormone driven; it is driven by protein, the HER2 protein. This would be a little different for others. For example, other breast cancer survivors might be told to switch to soy milk, while I have been told to avoid it, and try almond milk.
1. Exercise - 6 days a week for 30 min (brisk walking is enough)
2. Eat 5 servings of fruits & veg (yellow, orange & deep green) a day. Increase consumption of cruciferous veg to at MINIMUM 1 cup per day of cooked or lightly steamed veg. (Kale, Cabbage, Broccoli, Collard Greens, Turnips, Brussels Sprouts, Cauliflower, Rutabaga...a few others)
3. Maintain healthy weight. She told me lose the "chemo weight" after I recover from surgery, which of course I had planned to do anyway. But, having a person in the cancer center tell you to lose the weight means something. Did I mention I gained 10-15 pounds, depending on the day? I have lost 3 so far. A lot of it is water retention, I know. My fingers are puffy. Anyway....I am highly motivated so I don't anticipate this being a problem.
4. Limit red meat to 2 servings per week (yes, this includes pork), and avoid all processed meats (sausage, deli meats, smoked meats, bacon). Try to make meat NOT the main focus of a meal. If eating poultry, try to increase its quality (organic, etc.).
5. Avoid charbroiled and overcooked (charred) foods. There is a lot of explanation on this one about HCAs forming at high heat....which are carcinogenic.
6. Aim for 1400-1500 mg of calcium each day and 1100IU of Vitamin D. There is a big association in breast cancer patients of low levels of Vitamin D and recurrence.
7. Drink 3-5 cups of green tea daily.
8. Avoid alcohol. Even small amounts matter. Very sad about this one. :( If I choose to drink occasionally, she recommends a light beer or red wine, and to supplement with folic acid.
9. Dietary fat should be decreased to 15-20% of total daily calories. She calculated 28 grams of fat a day for me. Breast cancer thrives on fat. I just started really tracking my eating, and as she predicted, this is going to be really difficult. But....we will get there. I have always prided myself on not "dieting" and whenever I knew I had gained weight then I just decreased calories to get my pants to fit right again, or increased activity, etc. Now, to have to pay so much attention to food, goes against my grain and does not make me happy, but at least it IS interesting, and I know it DOES make a difference, and I don't really feel like I have a choice at this point. I am getting over it. :)
The 3 most important are numbers 1, 2 and 9.
Today I met with the lymphedema specialist and my arms were measured and I was fitted for a compression sleeve and glove. I will use those in the hospital and then have them if there is a problem later on. The woman was really great. I don't know exactly what happened, but she was talking about breast cancer and the journey and asking if I had "talked" to anyone, like a counselor. I said no, and she was so warm, she grabbed my hands and said that I really needed to do that, and I don't remember what she said after that but I felt the tears start rolling down my cheeks. I even made the poor lady cry. I have found myself to be so emotional over the last week. I am guessing it is all of these appointments where my/our attention is hyper focused on the cancer again. My mind is reeling with new info. I am dreading the surgery. I cannot really explain it well, but I am still having trouble "accepting" that this is really happening and that I have to "live" with this for the rest of my life. I so want to go back to the feeling I had before, of walking around and feeling so very fortunate, blessed, happy, light, free. I know we are still all of those things, but it feels different and I prefer the old feeling. I hope that makes sense. Yes, I am working on accepting the "new normal"... a term I already dislike but it really is the best description I suppose.
I don't want to end on a down note, but I have to go pick up my sweet Caroline. My final appointment before the surgery is this Wednesday for pre op with the plastic surgeon. I will add more later! Thank you for continuing to read and encourage!!
Tuesday, January 6, 2015
New Year Update
Happy New Year everyone! I want to get a very quick post out for those still reading along!
Christmas break was a much welcome break in the routine.....Chris had most of the time off and for the first time ever we didn't travel!! As hoped and planned, I was feeling good enough to attend the Peach Bowl here in Atlanta and man, it was so exciting to be there and cheer the Frogs on to victory over Ole Miss. That was on a Thursday, exactly two weeks from my last infusion.
There has not been any dramatic "bounce back" the way it happened with the first 8 weeks of chemo. This is more gradual, but every day I am feeling a little more energetic. My mind isn't so weighed down by the fatigue. That part feels good. I am anxious about the upcoming surgery, but praying for peace and logically, I am completely secure that we are doing the right thing. The neuropathy is getting better, along with the shooting pains, so that is also good. The hot flashes, on the other hand, are much worse again. I plan to talk to the oncologist about it this Friday when I see him again. I can only assume that my body has grown accustomed to the dose I have been taking so I can sleep at night, and while it WAS holding off the hot flashes by day also (I would start getting them around dinner time and then they would continue until I took my little blue pill), now they are all day long and crazy bad....Surging heat through my chest and face and head then down my back and arms. Very distracting and of course, uncomfortable. My question for the dr is....why am I still getting them? Is this related to the Herceptin that I have to keep taking? You might recall that is the non-chemo medication that I have to take for a full year (because I am HER+). That is why I am keeping the port and have to continue going back to the Infusion Room every 3 weeks to get a 3 week dose of Herceptin. My first appointment for Herceptin only is this Friday. I love that I totally forgot that when I wrote my last post. I guess I wrote something about being glad to never have to go back to that place. After Chris read the post he said, "you know you have to go back there for another 40 weeks to get the Herceptin infusions, right?" Duh. I guess I completely blocked that, but regardless, it is NOT chemo, and I can drive myself and there are not supposed to be any or many side effects. We will definitely find out. And I have to remember that Herceptin is my friend. By all accounts it has amazing success in preventing my kind of cancer from recurring.
So.....my energy is improving, my mood is improving, my hair is growing....up to half of an inch already! Overall, I still can barely believe that this has all happened and is happening. I have read most of a book called Silver Linings that my sweet friend Wendi gave me, and I can so relate to the woman who wrote it....also a breast cancer survivor. She described the feeling as watching yourself in the third person, kind of like when you know you are about to be in a car accident and all of a sudden it feels like this isn't really happening, but you are watching it happen? That is a pretty decent description of how I often feel when I think about this cancer thing. I think back over the last SIX months and it's like, did that just really happen?!?
I have cancer-related appointments for the next several days. Today I saw the general surgeon for our pre-op appt. A few questions were answered, I signed the consent forms, they examined me and made sure that my incisions have healed well from the lumpectomy and sentinel node removal. My under arm and under side of my arm remain numb from the removal of my two sentinel nodes. They say this is normal, and it doesn't really bother me, but it's a funny thing to touch your arm and feel the pressure but not really the touch. I also spoke with the cosmetic surgeon for a few additional questions I had. I know I will have two drains coming out of each breast, for at least a week. I have read that there are special camisoles that you can buy with little pouches to put the drains in so that they don't pull on the surgical site, which is uncomfortable or painful. I plan to look into that ASAP, though I think I can also pin them to an oversized button down shirt and be fine as well. At this point, my parents plan to come and stay with us for at least a week, or as long as I need them, to help around the house and with the kids. Apparently I will be instructed not to lift anything over 5 pounds for a period of time. All of this sounds lousy, but I am very confident in the team that I have assembled. I ended up deciding to use Dr. Joseph Woods as my plastic surgeon. He is the head of plastic surgery at Piedmont, and has excellent credentials, and has many cancer and non-cancer patients. He gave me some good advice on how I can help prepare for surgery, so that made me feel better to have a "list" of things I can do.
Tomorrow I have to go back to the hospital for another echocardiogram. You probably remember that this is because the first chemo had the potential to damage my heart (with some of that potential damage not showing up until much later), and the Herceptin also has a potential side effect of heart damage. Now that I am going to Herceptin only, they need another look at my heart to see where we are and to compare it with the after Herceptin heart images. Thursday I finally have an appointment with the nutritionist at the Cancer Wellness Center. I hope to walk away with some specific pointers on foods to avoid, foods to enjoy, etc. I have read so much conflicting information, and I know that this is an area of controversy and I know that there is no "cure" so to speak and that is not what I am thinking. BUT.....I want to be informed and I DO believe that different cancers have different triggers in different people, and I know that we have room for improvement in our family diet. I want to find something realistic, yet I am willing to make changes. We'll see what she says. If I walk away with just the idea that a standard healthy diet is the way to go then that is fine. But, I am curious to know what advice is being given out to cancer patients by a nutritionist.
As I said, on Friday I go back to the regular place where I have been taken for my chemo, and they have to access my port again, but the Herceptin should take about an hour, if I remember correctly. At this point, I consider that not too big of a deal. Then Monday I have an evaluation appointment with a Lymphedema specialist. I think I wrote about this before so I won't get into it again, but it is related to the risk of lymphedema (unhealthy swelling in the arm due to the lack of good remaining lymphatic channels) in my right arm as a result of the removal of so many remaining lymph nodes under my right arm. I will be fitted for a special sleeve (sort of like the blood pressure cuffs) to use during risky times, like flying. Whew! Lots of appointments. And I can't believe my surgery is two weeks from tomorrow!! Yikes.
I am ending with a couple of photos I realized I never included. These both arrived by mail as a surprise from my sweet cousin Erin, all the way from Utah. I am saying cousin because I don't know the term for "wife of my husband's cousin" but I am pretty sure that cousin is the right term for this gal! Reminders like these touch me more than you can imagine. Each time I see them I think of the person who gave the gift, and the heart they had to think of me, when there are so many other things they could be thinking about!
Christmas break was a much welcome break in the routine.....Chris had most of the time off and for the first time ever we didn't travel!! As hoped and planned, I was feeling good enough to attend the Peach Bowl here in Atlanta and man, it was so exciting to be there and cheer the Frogs on to victory over Ole Miss. That was on a Thursday, exactly two weeks from my last infusion.
There has not been any dramatic "bounce back" the way it happened with the first 8 weeks of chemo. This is more gradual, but every day I am feeling a little more energetic. My mind isn't so weighed down by the fatigue. That part feels good. I am anxious about the upcoming surgery, but praying for peace and logically, I am completely secure that we are doing the right thing. The neuropathy is getting better, along with the shooting pains, so that is also good. The hot flashes, on the other hand, are much worse again. I plan to talk to the oncologist about it this Friday when I see him again. I can only assume that my body has grown accustomed to the dose I have been taking so I can sleep at night, and while it WAS holding off the hot flashes by day also (I would start getting them around dinner time and then they would continue until I took my little blue pill), now they are all day long and crazy bad....Surging heat through my chest and face and head then down my back and arms. Very distracting and of course, uncomfortable. My question for the dr is....why am I still getting them? Is this related to the Herceptin that I have to keep taking? You might recall that is the non-chemo medication that I have to take for a full year (because I am HER+). That is why I am keeping the port and have to continue going back to the Infusion Room every 3 weeks to get a 3 week dose of Herceptin. My first appointment for Herceptin only is this Friday. I love that I totally forgot that when I wrote my last post. I guess I wrote something about being glad to never have to go back to that place. After Chris read the post he said, "you know you have to go back there for another 40 weeks to get the Herceptin infusions, right?" Duh. I guess I completely blocked that, but regardless, it is NOT chemo, and I can drive myself and there are not supposed to be any or many side effects. We will definitely find out. And I have to remember that Herceptin is my friend. By all accounts it has amazing success in preventing my kind of cancer from recurring.
So.....my energy is improving, my mood is improving, my hair is growing....up to half of an inch already! Overall, I still can barely believe that this has all happened and is happening. I have read most of a book called Silver Linings that my sweet friend Wendi gave me, and I can so relate to the woman who wrote it....also a breast cancer survivor. She described the feeling as watching yourself in the third person, kind of like when you know you are about to be in a car accident and all of a sudden it feels like this isn't really happening, but you are watching it happen? That is a pretty decent description of how I often feel when I think about this cancer thing. I think back over the last SIX months and it's like, did that just really happen?!?
 |
| Chris is measuring my hair! See - half of an inch. This is a view of the back of my head, in case you were wondering. |
Tomorrow I have to go back to the hospital for another echocardiogram. You probably remember that this is because the first chemo had the potential to damage my heart (with some of that potential damage not showing up until much later), and the Herceptin also has a potential side effect of heart damage. Now that I am going to Herceptin only, they need another look at my heart to see where we are and to compare it with the after Herceptin heart images. Thursday I finally have an appointment with the nutritionist at the Cancer Wellness Center. I hope to walk away with some specific pointers on foods to avoid, foods to enjoy, etc. I have read so much conflicting information, and I know that this is an area of controversy and I know that there is no "cure" so to speak and that is not what I am thinking. BUT.....I want to be informed and I DO believe that different cancers have different triggers in different people, and I know that we have room for improvement in our family diet. I want to find something realistic, yet I am willing to make changes. We'll see what she says. If I walk away with just the idea that a standard healthy diet is the way to go then that is fine. But, I am curious to know what advice is being given out to cancer patients by a nutritionist.
As I said, on Friday I go back to the regular place where I have been taken for my chemo, and they have to access my port again, but the Herceptin should take about an hour, if I remember correctly. At this point, I consider that not too big of a deal. Then Monday I have an evaluation appointment with a Lymphedema specialist. I think I wrote about this before so I won't get into it again, but it is related to the risk of lymphedema (unhealthy swelling in the arm due to the lack of good remaining lymphatic channels) in my right arm as a result of the removal of so many remaining lymph nodes under my right arm. I will be fitted for a special sleeve (sort of like the blood pressure cuffs) to use during risky times, like flying. Whew! Lots of appointments. And I can't believe my surgery is two weeks from tomorrow!! Yikes.
I am ending with a couple of photos I realized I never included. These both arrived by mail as a surprise from my sweet cousin Erin, all the way from Utah. I am saying cousin because I don't know the term for "wife of my husband's cousin" but I am pretty sure that cousin is the right term for this gal! Reminders like these touch me more than you can imagine. Each time I see them I think of the person who gave the gift, and the heart they had to think of me, when there are so many other things they could be thinking about!
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| Pretty pink bracelet with positive reminders and also a great way to raise awareness and share my story to help others |
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| Handmade quilt using my favorite color to tie it all together!! Made with love! Beautiful, and treasured. |
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