Drug Trial

Many of you have asked for a follow up to my last post about the possibility of a drug trial.  Here is the latest:

• I DID get my port out on 10/29.  It was outpatient surgery at Piedmont.  The initial injections of local anesthesia were a bit painful (burning) but they did the job...numbed me right up.  It was a little nerve wracking for my surgeon to be literally right over my hear and cutting, pulling, sawing, but it didn't hurt.  He said some scar tissue had built up around the port (did I mention that it was in my body 449 days?!?) so I could feel him sawing the blade to cut through all of that and then pulling..a very weird sensation.  It ooh him a bit to get it out, but then he stitched me up and we went out for Mexican.  :)  I am getting better at this "being a patient" thing.  
• After initially going by myself down to Newnan to the Cancer treatment Center of America for the first round of assessments, Chris returned with me for Round Two.  In the first round it was just the usual, physical by an internal medicine doctor and review of entire medical history.  I met with part of the Research team and we went over the parameters of the trial in good detail.
• When Chris and I went together, we met with the whole research team and were impressed with the lead research doctor there.  He is Dr. Ricardo Alvarez, originally from Argentina (and for those of you who know me well you know I love accents of any sort!!) and his credentials are awesome.  You can read about him here: http://www.cancercenter.com/southeastern/doctors-and-clinicians/ricardo-alvarez/.  Mainly, he has devoted his career to advancing breast cancer medicines through extensive research, including a Fellowship and Professorship in breast oncology at M D Anderson in TX.  We learned that this trial will take place at 35 hospitals across the country, with only 5 participating at this location.  He confirmed that quite a lot of research has already been done on this drug, neratinib, and that it would have already gone to market if the side effects were under better control.  I was reassured to learn that the drug all participants receive to control the side effects is called loperamide, which is the scientific name for Imodium. This made me feel better...at least I wouldn't be "trying out" two new drugs.  Basically, all participants follow the exact same protocol, and the trial involves us simply reporting back, daily, how we are doing.  
• Cutting to the chase....we decided it was in my best interest to go forward withe the trial with the clear understanding that IF the drugs make me sick, then I will drop out.  The research team said it would not be a big deal for me to drop out, they would not pressure me to stay in.  In fact, that would be very telling for them if a patient cannot tolerate the drug.  
• So, they gave me a chest X ray and an EKG and I started the trial this past Monday, Nov. 2!!  I have to take SIX little pills (the cancer drug - neratininb) daily, and Six (spread throughout the day) of the loperamide for the first two weeks.  I have a little blackberry device that I have to document how I am feeling and what is going on with my stomach daily...must be uploaded by midnight every day.  It takes about 2 minutes to complete....no big deal.  
• I am happy to report a couple of things. First, the pills are small enough that I can actually swallow them.  I was so afraid they would be horse pills!  I struggle to swallow big pills.  Yes, another life skill that I missed out on.  :(  But second, so far so good!  I am on DAY 4 and so far I feel almost normal.  The information we reviewed said I might begin to experience "stomach issues" within a few hours or a few days of the first dose.  Everyone is "elated" (their words) that I am doing so well.  I am elated, too.  As with many drugs, the first month or two are supposed to be the hardest while your body adjusts.  I am so VERY THANKFUL that so far I have just carried on life as normal.  Last night I did have some mild queasiness and some rumbling of the tummy, but nothing happened.  I went to sleep and woke up feeling great.  I am keeping my eye on the prize.....this drug has been proven to reduce my chance of recurrence from ~15% within 5 years to ~10-11% (25-30% reduction in recurrence rate).  As I said before, these are not huge numbers, but when it's your LIFE, and there's something not too difficult to do to help increase your odds, and it falls in your lap, then I am thinking...hhmmmm, maybe I should pursue this?!?  Chris has been on the lookout for over a year just to see what is going on in the world of breast cancer research and nothing ever came along that would apply to me.  Then, all of a sudden my other treatments were ending and this trial popped up, within driving distance and I am the perfect candidate and it is a non-invasive, non-scary trial.  We prayed about whether we should do it and that is what caused us to put up the condition that we did (about not being willing to go back to the feeling terrible again).  But I do not believe it was a coincidence that this thing landed on our doorstep.  Even the research team were astonished that we found the trial because they had not yet publicized it.  I happen to be married to a super husband who has figured out where to go to find the latest news.  :)  I am confident that we have made the right move for now.  
• Meanwhile, we had a fabulous Halloween and I kept thinking back to how lousy I felt last year.  I dressed up but didn't have the energy to go trick or treating with the kids.  I enjoyed spending some time with our neighbors, but it wasn't the same as traipsing around the neighborhood and enjoying the moment with the kiddos.  Not even close.  
• So, I am on Day 4 and so far so good.  I can tell there is a little something weird going on in the gastrointestinal arena, but that is it.  So everyone, keep your fingers crossed that I continue to tolerate this drug well.  I'd like to at least be able to take it for a few months, as even that amount of time has been shown to be positive.  Time will tell.  As always, thanks so much for being interested enough to read and catch up on the latest health happenings.  Until next time....happy Fall!

Upcoming Events

Hello friends!

This is just a quick note to update a few things.

• I finished my Herceptin on schedule - YAY!!  The last one was September 28th!  That completed a full year of treatment (every 3 weeks) and I am so thankful that is behind me.
• I have what I hope is my final echocardiogram today. I know they will have to give me an IV (ugh!!) and push the colored dye in my veins since they cannot seem to get good images of my heart with my new chest without the contrast.  So far...my heart has remained healthy and no muscular atrophy has been seen.
• Tomorrow I begin a series of appointments to further investigate one particular drug trial.  This is the one that was first run out of Birmingham.  It filled up, but then it was expanded and the doctor in charge changed hospitals and is now in Newnan, GA.  We have prayed long and hard and still have not made a final decision.  We are going down there and meeting the people in charge, getting more details then we will decide.  This is the trial that would give me a drug that studies have shown have very good results as far as reducing the chance of recurrence.  The stats I recall are...at this time I have a 10-15% chance of breast cancer returning within 5 years (remember, mine in not hormone driven like the majority, it is an aggressive HER2 positive kind).  This new drug decreases the chance of recurrence by about a third.  That sounds encouraging.  However, there are a couple of significant down sides.  One, as my oncologist points out, is that per accepted protocol, I am "done" and they have labeled me "ready to move on" and of course I would love to put cancer behind me, too.  Second, this good drug has a lousy side effect....severe stomach issues.  In fact, lots of women have dropped out of previous studies due to the severity of the stomach issues (hospitalization due to dehydration type of issues - ugh!!).  So, that brings me back to the current study.  This particular study is not about the cancer drug - everyone receives the good drug which is what I am interested in - but the trial is about managing the side effects.  Everyone is also given a new drug that is intended to control the stomach issues so that the cancer drug is tolerable to women.  So....you can understand my quandary, I hope.  I am a very logical person, and when I see stats that can improve my chances of living, I am thinking, heck yes, sign me up.  But, of course I realize there are no guarantees and as my brother lovingly pointed out, I could get killed on 285 at any moment.  Yes, thank you, that is true.  I am well aware I have ZERO control over things like that and I do not fear death.  However.....I prefer to die an old lady surrounded by grown children and grandchildren...call me crazy!!  What I DON'T like is that cancer will remain a focus for another year....but I also like the idea of being watched closely and being monitored more closely than I would otherwise.  Am I willing to feel lousy for a whole year (the length of the study)??  I have thought and prayed about this, and I *think* the answer is NO.  I want to try this, but my family has already sacrificed so much and I am feeling great and I do NOT want to return to the days of nausea (and worse) and feeling housebound due to stomach issues.
• So.....if you are inclined to pray with me for clarity...this process starts tomorrow and we meet the main doctor next Tuesday, October 20th.  I am very interested to see if he and his team have anything to say that is new news.  I am interested in the statistics.  This drug is very specific....it picks up where Herceptin leaves off.  I cannot explain exactly how it works, but whereas Herceptin suppressed my body's production of the HER2 protein that fed my cancer, this drug I believe causes the HER2 protein (that I guess my body will begin producing again) to not bind to any cancer cells that are in my body.  Gosh - I can't explain it right, but I know it is HER2 related but it works differently than Herceptin.  And it is given by pill, so I wouldn't have to go anywhere to get an infusion.  So yay - my port can come out!!  I would have monthly check ins down in Newnan.
• My port is scheduled to be removed on October 29th!!  Super big yay!!  Another milestone.  This is outpatient surgery...no big deal.
• My final procedure on my new chest is scheduled for November 13th!  So...lots of finishing touches happening, and that all feels wonderful.
• I think those are the highlights.  If anyone has any wisdom about the drug trial feel free to reach out to me.  Otherwise, as I mentioned, we are praying for clarity...trying to keep an open mind and allow ourselves to be guided in the right direction.  As always...I thank you for your support from the bottom of my heart.  Big hugs!

Summary of what's going on!

Hello there!  I can't believe it has been so long since I have written.  The good news is life has gone on!  I was in a pretty good place and going in a very good direction as of my last post.  In an attempt at brevity (which you guys know is so hard for me), I am going to try some bullet point updates related to my health, since that is usually the first question people ask when they see me.

• Note the new counter at the top of my blog page!  Only 2 more Herceptin treatments!!  (Read prior post if you forgot what that is)
• Even though Herceptin wasn't supposed to have any real side effects, I began having trouble with it pretty early on.  As soon as the drug would begin dripping, I immediately felt shaky, weak, nauseated and like I was going to pass out (they say it is like an anxiety attack).  Through trial and error, the doctors and nurses came up with a combination of things for me to be able to get the Herceptin without any problems at infusion.  I have to take anti-anxiety medication, then they drip some steroid first, then start off the Herceptin at a much slower pace, then speed it up after 10 minutes.  
• The rest of Spring semester went really well.  I continued my right arm rehab and regained full range of motion.  It is still weaker than it was, and the back side of it remains numb from the surgery.  This is "normal" and it may remain numb forever, or sensation may come back.  The same is true under my right arm where they removed the lymph nodes.  I still watch really closely while I shave because I can't feel the razor blade.  Such a weird feeling!
• On April 1st I went with a friend to a hairdresser who has a mini salon in her basement.  She has cut other ladies' hair and shaped it as it grew back after chemo.  Even though I had so little hair, I really wanted to get out of the wigs.  However, I really didn't believe that I would be mentally ready to let go of them, even as I went into that hair appointment.  BUT....she tapered the sides and the best part was she put some color in it (it looked to me like there was a lot of grey in there before!) and I somehow was brave enough and boosted up enough by these two ladies, and then by Chris when he saw it, that I just thought...to heck with it!!  And even though I planned to keep wearing the wigs until my hair was longer, I braved the carpool line without my wig that day and I felt like there was a flashing neon sign over my car saying, look at her and her hair, but I tried to stay rational and remind myself that it's not all about me and that I was being ridiculous to be obsessing over my hair and what people think so much.  Once I got over that silly mind game, then I was fine.  
• So basically, from Easter onward I was finished with the wigs!!  This was much earlier than I had ever imagined, and it was incredibly freeing to be without them.  I couldn't believe all of the compliments I received.  I think people were just being nice, but regardless, I WAS looking a lot healthier, because I was able to start exercising again, spend a little more time outside and that little bit of fresh air and sunshine make a huge difference.  And, I was cooking family meals again, and we were really back on track with nutritious food.  We were not perfect by any stretch, but I was following the guidelines that the Cancer Nutritionist gave me, and things were rolling along really well.  
• I continued my 12 weeks of prescription Vitamin D, and then another blood test showed that my Vitamin D level was finally within normal range.  Big yay!  Remember friends, when you go in for your physicals, ask your doctor to check your Vitamin D level.  Even my oncologist didn't check mine without me asking.  Low D levels have been associated with all sorts of cancers.  I now take over the counter daily D supplements to maintain my normal range.  
• I continued to see Dr. Woods, my plastic surgeon, and get my expanders filled.  That was interesting, and we had a few issues with lopsidedness, and trying to figure out how you want your new chest to look, and trying to compare what the tissue expanders look like versus the final implant.  The doctors know exactly how much was removed during the mastectomy, but that doesn't necessarily translate to putting that exact amount back because the shape is different.  Anyway...we worked through that and I finally made a decision that we were "there."  I had not realized that the expanders needed to stay in place with their final input for at least 6 weeks prior to switching them out for the final implants.  So, that time frame took us to the end of the school year and so I ended up going on our fabulous "reward" trip to South Africa with the expanders.  At first I thought this would be an issue, but it wasn't at all.  Again, as far as cancer and mastectomies go, I sort of got "lucky" in the sense that the expanders didn't really bother me at all.  They were a little too wide for my chest, and in certain positions I didn't like that it felt like they went under my arm a bit, but overall I didn't spend much time thinking about them or being troubled by them.  Apparently, many women are uncomfortable with them, so again, I consider that another thing to be thankful for.  
• My regular echo cardiograms kept coming back normal, and that was also great news. In previous posts you might recall reading about the heart risks associated with my first chemo cocktail and then with the Herceptin.  I believe I have another echo coming up after I finish Herceptin, but I have no reason to believe that it will show any damage either.  The only thing that changed about the echo cardiograms is that the technicians are not able to get good pictures of my heart with either the expanders or the implants, so I have to have an IV (if you are new to reading this you can go back to one of the very first posts and read about how ridiculous I am at getting an IV put in) so that they can put a color dye in my blood stream so that they can see my heart function more clearly.  Ugh.  I really, really do not like any of that, but I understand it is part of the process and I am actually getting better at it.  Last time, I didn't even come that close to passing out, though they did keep telling me to breathe normally or I was going to hyperventilate.  I always feel sorry for my nurses.  :(  But I am really super nice to them.  
• April was a good month....attended the Whitefield auction with my new hair, and a couple of weeks later we had the much anticipated Pink Party at our house.  I absolutely loved that evening.  I wish I could have invited every single person who prayed for me, encouraged me, hugged me and held me close int heir thoughts.  As it was, I invited everyone local who drove me to chemo, held my hand, cried with me, showed up to walk/talk with me, cooked meals for our family, and who watched the kiddos and drove them when we couldn't.  It was our way of saying "THANK YOU" to these friends.  We had about 60 people show up in pink at the house, and even though I haven't been indulging in adult beverages at all much anymore, the cocktails were flowing, and we had hired this duo that I love to come and play for us and they totally rocked, and then I had fun making a playlist of songs that meant something to me and that were danceable, so the evening was exactly what I hoped for.  I looked around the house and it was filled with warm, loving people who cared about my family, and I stood amazed at this total curve ball that had been thrown at us, and yet here we were, in a good place.  Chris surprised me by making a speech that moved me, right when I had planned to get up and say a few words of thanks.  He said it better than I would have, I am sure, and I was happy and thankful beyond measure to have him and all those people (and many not present that evening!) on this crazy journey with me.
• May felt like a regular May, other than my Herceptin treatments.  They seem to accumulate and each one hits me a little harder than the one before.  Basically, I am able to drive myself, but I am feeling really drowsy and tired by the time I leave (often dozing through part of the infusion), then I arrive home and that is all she wrote.  I set my alarm to pick up the kids, drive the 5 minutes to get them, then get back in bed.  The next day I usually spend napping and laying around because I am so very tired, weak and achy.  But, usually on the 3rd day I can get up and get going and things fall back into place.  
• I could write pages about our Africa trip, but suffice it to say that it was a dream trip, and we enjoyed planning it.  During some of the very dark days, thinking about it was so uplifting, and to finally have it happen was almost unreal.  I feel so very blessed that we were able to do such a thing, and to make that memory with Chris and the kids was truly priceless.  There were numerous "special parts" but for me, the top highlight was the safari aspect.  For me it was all about the animals from the very beginning.  For the last five nights we stayed in a game lodge and our schedule was wake up at 5:30, coffee at 5:45, start the AM safari at 6:00, stop in the bush somewhere around 7:30 for true sunrise and enjoy more coffee/hot chocolate and breakfast goodies then continue in the bush, tracking various game until about 9/9:30.  Upon return we had a hot breakfast then free time (pool, bush walk with guide for the adults, sitting on veranda that overlooks water hole and watch the various animals arrive to drink....I could do that all day long) until lunch at 2:00, then load up for the evening safari at 4:30, stop in bush again at sunset for a "sundowner" (cocktail or beverage of choice) and appetizer, continue the safari in the dark with the tracker using a spotlight to seek out predator animals (remember it was their winter so it got dark at about 5:30/6), then arrive back for a multi course outdoor dinner around the fire under the stars at 7:30.  It was exhausting but amazing.
• Upon return from our trip, I had my "switcheroo" surgery (take out expanders, put in final implants) on June 29th.  My original cancer diagnosis came on June 30th, 2014, so I thought the "full circle" aspect was interesting.  Though I wasn't completely finished with my treatments, it felt like this was the last big hurdle in this long process, so it felt appropriate and a little symbolic that this step happened on the last day of my "year of cancer."  I had the terrible drains again - big boo - but at least we had learned quite a lot from the prior surgery and I even remembered to make sure they didn't use that one adhesive that gave me hives last time. Ugh...that was terrible.   I had to keep the drains 9 days, so that was a whole lot better than 20 or 21 last time. 
• Recovery from this was much easier than the mastectomy, but I had underestimated it a little.  My lymph nodes were not involved, therefore my arm was not affected as it was with the mastectomy, so that cut recovery time a lot.  However, it took a little longer for my chest muscles to recover than I first thought.  It's amazing how much pressure it puts on your chest to pick up a gallon of milk.  Or to turn a steering wheel.  But, I was back up and running in just under two weeks, and with two more weeks I could start really putting significant pressure on my arms (push ups, etc.)
• The last two Herceptin treatments remain, then I believe I have a minor surgery to get my port removed. That will be a big deal to me, because even though I don't really feel the port, I don't like seeing it, I hate that I had to have it, and it affects my clothing choices, the way I wear my seat belt and it really does hurt to accidentally bump it.  I will be a very happy camper to get it OUT of my body.  
• Here are the question marks......there are two drug trials that Chris and I are keeping tabs on and for which we believe I could be a candidate.  One is tied up in a lawsuit and on hold at the moment, but involves a vaccine for my particular breast cancer (HER2+, ER-/PR-).  The other is ongoing, run out of Birmingham (which is a doable, drivable distance) and is aimed at women just like me...post surgery, post chemo, post Herceptin.  There is a drug similar to Herceptin (that suppresses the body's production of the HER2 protein the feeds my cancer (if there is any left in my body or if my body makes it again....these are my very real fears)), that seems to be well thought of, but its side effects are very troublesome.  The trial would give me access to this drug, but the trial is actually testing a second drug and its ability to control the nasty side effects of the first drug (stomach issues, to the point of hospitalization for many women).  My oncologist does not think I need to "go there" but I am not 100% convinced.  Chris seems to agree with the dr.  Frankly, I am scared to go off the drugs.  I like the idea of continuing something...at least trying.  This is currently in debate at our house.  There is no clear answer and I don't think there is a right or wrong choice.  Chris is ready to "move on" and put cancer behind us, and being part of a trial does not do that.  I get that.  However, a trial means that I have a doctor paying close attention to me.  My blood will be checked more regularly than otherwise.  Maybe the side effects won't be so bad.  Maybe the new drug can control the side effects.  Maybe the drug that gives the bad side effects will do other good things in my body.  Who knows??  My oncologist says that he believes we have been successful.  We have followed protocol.  But my mind keeps going back top all the things that DIDN'T go as predicted.  No one thought that the irregular mammogram would be cancer.  It was supposed to be a calcification.  Then when it was cancer, it was estimated to be smaller than what it was, thus forcing a mastectomy (or another lumpectomy). Then when they tested whether it had spread to my lymph nodes, it looked like it hadn't, but then during surgery they found out they were wrong, and that it had, thus forcing chemo (and a whole lot of fear).  So, from my perspective, I look at this as a "leave no stone unturned" kind of way.  Everything about this has been more aggressive than we thought, and I have a right to my fears.  I realize I cannot live that way, and I don't believe I am most days, but long story short....we need to make a decision about this ASAP.  If the door has already closed, then I suppose it was not meant to be, but I want to make a proactive decision, and not let time pass us by and miss an opportunity for lack of effort.  

I believe that brings us about up to date!  I will add some photos when I have a little more time.  I cannot believe how curly my hair has come back.  This is normal for after chemo and usually lasts a couple of years.  For anyone who has seen me lately, I am well aware that if I were planning to maintain this hair "style" that I am in desperate need of a shape up.  However, I don't like the thought of cutting it while I am trying to grow it out.  We'll see if I can keep it under some level of control, but with these crazy curls it is getting big and bushy and this Atlanta humidity is not my friend.  I just want everyone to know that I am WELL AWARE that we have entered an "awkward phase" and I am debating what to do with it.  It no longer passes for what I called a pixie.  Anyway....compared to all of this other stuff.....this is not a big deal.  No, I don't want to walk around looking like a goober, but if I wash it, put some anti-frizz product in it and let it dry on its own, it seems to sort of stay down so I am going to stay with that as long as I can.  :)

So....count down the days with me until this final infusion on September 28th!  Thanks for reading!!

From April 7

(Note: I just found this in my Drafts and decided to go ahead and publish it.)

I have not posted in what feels like a long time, and several of you have asked if I have stopped.  No, I think I want to continue this journal, but things are not happening as quickly as they were there for a while, and I have enjoyed the "distance" quite a bit.  Though....when I stop and think about it, the distance makes me nervous, too, because I feel like I am much more left to my own devices to "fight" this thing.  Clinically, I have been declared "cancer free" so that DOES fill me with a large degree of comfort.  BUT.....you all know I am a generally very positive person and a person of faith, but tempered with a HIGH dose of reality.  I have seen and heard of way too many people who have had cancer return and have had to fight for their lives in a much more serious way than what I have even gone through.  Those are the thoughts that scare me.  I realize I cannot dwell on them, and I don't most of the time.  But they are "out there" and they certainly fill my prayers....not just for me to live long, but for so many others who are fighting the good fight.

I don't have much time today....two doctor appointments.....but I felt compelled to write.  I have my third or possibly fourth echocardiogram today.  Last time they did not need to use the dye contrast, and I am really praying they don't have to this time either.  I don't plan to go by the Cancer Center for them to access my port first, so if they end up needing the dye, then that means an IV, and if you've been reading this thing from the beginning you know my difficulties with needles.  I really don't want to end up in the ER again after passing out!!  This echo is to test my heart again to make sure there has been no damage to the muscle (possible side effect of chemo cocktail #1 as well as the Herceptin that I am currently getting infused every 3 weeks).

Before that appointment I have another with the Lymphedema Therapist.  Great news - I have FULL range of motion that has returned in both arms, so that is fabulous news.  According to Gwen, the therapist, I have been quite the "rock star" in terms of doing my rehab and getting back to where I need to be.  Now we are working on regaining strength, using weights.  It was crazy how weak my right arm in particular was after the surgery.  Forget opening a new jar of pickles!  No way.  This mostly affected kitchen stuff....lifting a pan off the stove, etc.  But that is slowly but surely coming back.

I am still seeing the great nutritionist over at the Cancer Center, and she is highly motivating.  Of course, deep down it is fear that is highly motivating.  I hate to live that way, and maybe that will change over time, but I don't want to have any regret.  IF the cancer were to come back, and I HADN'T done all of the things that had been suggested to me, I would always wonder if I should have.  So, I am doing a good job of logging my eating and exercise using the app My Fitness Pal, sticking to 1300 calories a day with a  few exceptions.  I have lost 11 pounds since Christmas, so a lot of the puffiness has gone.  I think a lot of that was water retention from all the drugs.  I have been exercising 5 days a week, which is a first for my entire life.  Even when I was on a roll in the past, 3-4 times a week was a good week.  But, studies show that exercise is a huge fighter against cancer (along with most disease!!), but mine in particular likes fat (and certain proteins), so my goal is to lean out a bit and deprive any cancer that might remain or return of an environment that would allow the cancer to thrive.

Feeling Good

Let's see....sorry for the lack of updates!  As you know I wasn't feeling too good up until my in-laws left on Valentine's Day, then life has seemed really busy again.  I began driving a little over 3 weeks post surgery, which was much longer than I had expected, but I knew the mobility in my right arm, especially, was not where it needed to be to safely drive.  Plus, that is what the doctor said and I can't help it, I'm pretty much a rule follower.  But, even though my arm wasn't 100% and my energy wasn't 100%, I had made the turn for the better and was feeling better every day.  The "cure" for the energy was to get up and moving more and to get back on track with healthy eating.

I felt good enough the week before Valentine's Day to attend a 5th grade moms' lunch, even though I had to be picked up and driven.  Prior to that I had another appointment with the Lymphedema Physical Therapist, whom I just love.  However, on this particular day it was a ROUGH session.  I had realized a few days prior that the area toward the top of my arm was growing more and more sensitive, and that I was actually losing a bit of mobility in it.  It was so sensitive just to the touch, and I was wincing through the process of just putting on my compression sleeve.  But I knew I was set to see the PT in a few days so I let it go.  Apparently, what had happened was that after I had the 12 nodes removed under my arm, the lymph vessels were of course left sort of just dangling in my body where they had been cut apart from the nodes.  These vessels can "grow" and attach to other nodes (good) or grab onto whatever is nearby....a nerve, muscle or some of tissue in the vicinity (bad).  She called it "webbing."  Obviously (to the PT), some of my dangling lymph vessels had attached themselves to the wrong thing and she had to "work it out" and stretch my arm so hard.  It was incredibly painful, and I'm really not a big cry baby, and there was no sobbing or "pity me" tears, but I will admit tears ended up streaming down my face just from gritting my teeth so hard to get through the session.  My sweet mother-in-law had driven me and she had to watch the whole thing.  We stopped halfway to give me a break and allow me to take some Tylenol.  The therapist did the equivalent of a deep tissue massage in the area and it hurt like Hades, but when all was said and done, the pain was gone.  It was crazy.  My mobility increased a bunch by the end of the session and I couldn't believe that she was able to loosen those vessels or get them to break off completely.  Before we left I could poke and prod the area that I could barely touch before and it was pain free.  And I could raise my arm up over my head....not quite to the goal zone but SOOO much further than before.

Of course, as luck would have it, this appointment was immediately followed by the 5th grade luncheon, and I was already running late, so not only was I physically exhausted, but the makeup I had worked hard on that morning was now all streaked.  But, oh well.  I did my best repair job and life goes on.  I was still thankful to be able to attend and try to get involved in our new school community.  It was extra important to me because I was finally convinced that I was REALLY going to be able to make that trip to Space Camp with the 5th graders, and I thought it might be good to try to meet some of the kids' parents.

At this point I was still taking Advil every 6 hours and if needed, depending on my level of activity, adding Tylenol in the middle.  I am still taking the hot flash medicine and the Rx Vitamin D.  Getting ready for and attending Space Camp was a big "jump start" but I think it was a great way to sort of drop me back into "normal" life.  We all boarded buses and left on the 18th and it was go-go-go the whole time.  The weather was crazy cold her and even colder in Huntsville.  It snowed off and on over the three days we were there, so some of our outdoor activities were limited.  But, the good news was I was able to hang in there with my energy level.  And, I now know ALL of the the 5th grade girls' names and some of the boys.  I got to know the teachers better, which was another goal.  I met more moms and dads, though I obviously spent more time with the moms, mainly because we slept dormitory style, so there was that time together in the morning and evening.  I was a little nervous about the whole getting ready process, but I couldn't figure out a way to get the wig on in secret or anything, so I just had to "get over" being seen in my comfy sleeping cap, looking like a cancer patient.  It turned out to not be a big deal.  It's just that that has been so private for me, it felt very strange to have others around with my PJs on and my not-quite bald self.  There were two dads in our group who I enjoyed getting to know, and I was so excited that I was able to participate in all of the various "space activities"....including the simulators! The only other female grown up in our group was Caroline's teacher and she wasn't feeling very well during some of the trip, so I had to rely on these two dads' opinions about the various simulators and whether it was a reasonable idea for me to try them.  They were both very kind about thinking it through and as it turns out, it helped that I haven't been "inflated" much yet because most of the straps of the simulators are tight at the waist and then across the shoulders.  Anyway....memories were made without a doubt.  Caroline was happy, I was thrilled, some might have been shocked that I was there, but it all worked out just the way it was meant to and I feel not only fortunate but blessed to be able to participate in what I think was a "high point" of 5th grade.

Ready to board the bus!!

In Mission Control!!

First Simulator - 1/9th Gravity

Meanwhile, during our time in Huntsville, Chris was also fortunate enough to be selected as a chaperone for the 3rd grade cave trip in Alabama.  They were supposed to leave early Thursday and have a bunch of outdoor activities then enter the cave, tour it and spend the night in it that night.  Once again, the cold weather impacted their trip, but I just mention this to point out that we, as a family, are feeling a lot more a part of our new school and we are thankful for these opportunities to not only make memories with our children but to be a real part of this school community.  That is the thing I have missed about our old school......knowing each child and most parents in our children's grades, along with all the school staff, and many other kids in other grades, too.  By the way, Chris survived the cave, and actually slept a little.  :)

So.....life feels like it is getting back to some normal.  I am still in the wigs, but I have about an inch of hair now.  I am using a special shampoo, Mane and Tail,  that a fellow cancer survivor suggested that is for horses but fine for human use.  I have read nothing but rave reviews about it promoting hair growth and thickness.  I think I have thoroughly confused a few Whitefield parents and kids, though.  I decided on wearing the Ariel to Space Camp because it is the lowest maintenance with all of those curls.  It still looks "acceptable" with a tousled look, and honestly I had a winter hat on my head the majority of the time there so it didn't really matter too much.  But in general, when I have attended a performance or something at school, I were R2, the original.  Caroline has told me that friends have asked her whether that was her mom or not, even after I just spent all of this time with them, because my hair color all of a sudden changed and lost the curls.  Oh well.  It will change again before too long because once the weather warms up and I get a little more length, I plan to try some ultra short style just to be free of the wigs.  That will be an exciting day.

To finish the update....I had another Herceptin infusion this past Monday, and as you know they draw blood beforehand and use my port, so even though I am feeling pretty good and trying to put cancer in the right "compartment" in my head and heart, it is EXTREMELY sobering every time I walk in that infusion room (same place where I got all the 20 weeks of chemo).  Even though Herceptin isn't considered chemo, it is a serious drug, thankfully with little immediate side effects, and the nurses still have to suit up from head to toe and it still comes double bagged with the scary warning labels.  They were packed on Monday and I was there for a lot longer than needed for a 30 minute infusion, but I was glad to get to to see my oncologist again (vs the PA, whom I really like, but not the same as the dr.).  My white and red blood counts remain below normal, especially the red, so I know I still have healing and recovery to do, but we are getting there.  I met with the nutritionist via teleconference on our Wednesday "snow day" and was happy to share that I have lost some of the weight gained during surgery recovery.  The weight thing is frustrating, but I can only control "so" much.  I gained weight during chemo, then lost some prior to surgery (just eating better and being more active then finally beginning to exercise again), then gained some from surgery (again....water weight in addition to lack of activity), now finally pounds are coming off again due to rejoining a normal level of activity and beginning to exercise again.  All of this is normal for this process, but gaining weight feels like adding insult to injury.  Anyway....we are moving in the right and healthy direction again so once again..thankful.  We are focusing on hydrating, exercise, and keeping the 1300 calories a day with a special focus on limiting fat grams and pushing the veggies.

On Thursday I saw both Gwen, the rehab therapist and Dr. Woods (plastic surgeon) again.  The rehab was a good appointment.  I have been faithfully doing my arm exercises and my range of motion is in really good shape.  Not too much pain this time.  She added some weights and changed up the exercises a little, but so far so good.  She also ordered me a special sleeve for sleeping.  It will look like an oven mitt.  This is because I had arm pain on Tuesday night that kept waking me up and then it persisted on Wednesday, even with Advil.  She remeasured my arms and I do not have lymphedema, but the pain is a warning sign so she is erring on the side of caution.  Also, I forgot to mention, but I was told to wear my compression sleeve during space camp, which I did, and to use it 3-6 hours a day.

For Dr. Woods I had my 2nd infusion of saline.  Last time I didn't describe this process, so let me take a moment.  It is so strange to have these expanders in the first place...they feel overly wide for my chest.  But, as the doctor says, they are serving a purpose (expanding my skin and tissue) and will be replaced before too long.  But the process is strange.  There is a small metal disc inside each expander near the skin.  The doctor locates it with a metal detector-like thing, then marks my chest exactly where it is.  Then he takes a pretty big looking needle and infuses saline into the spot he marked.  No painkiller or anything.  But, my chest is numb so I don't feel a thing.  It's the strangest thing.  You guys know I don't like needles, and in fact this last time I instinctively jostled his arm (as in almost swatting him away) as he was getting ready to infuse me and the needle was drawing closer.  He stopped and looked and me and said I can't do that again or we'll have trouble.  I apologized and said it was just instinct......happened before I could even stop myself.  So embarrassing.  So, I just grabbed my belt loops and held on for dear life, feeling sure that it was going to hurt (I mean it is a big old needle), but then it's over and I felt nothing.  Gotta love mind games.

That evening it felt so good to be able to head to school feeling pretty normal to go see Caroline perform in the school play.  As I was walking from the parking lot another mom asked if I was heading to the play and after I said yes, she introduced herself and when I said I'm Rebekah Kern, she grabbed my hand and said "Oh my goodness!  I'm so happy to meet you!  I've been praying for you!!"  Moments like that are sobering and I can't really describe what it feels like to think about how many prayers have been sent up in my name.  She was super sweet and we had a nice chat before helping out our daughters.  This was when the 5th grade kids were confused.....I was wearing R2 and they were used to a curly red head Mrs. Kern from Space Camp.  Caroline told me they were asking her about it, trying to confirm that I was her mom.  Made me chuckle.

Caroline was a White Queen in Alice in Wonderland, put on by 5th & 6th graders.  They all did great!

So....that is mainly the update.  We will continue this process with rehab and infusions until I get full range of motion back and back to the size I was.  I am working on menus and recipes and we are eating at home and I am starting to put the time into meal planning and cooking.  I didn't realize how dependent I had become on convenience foods....but even muffins on Saturday morning were typically made with a store bought mix.  The nutritionist is teaching how much better it is to avoid those and make your own, where I control the ingredients and avoid so many unwanted extras.  We have always been pretty good with veggies, but it is helpful to hear from a person whose life work is food and how it relates to cancer and the body.  Motivating.  Not to mention accountability.  None of this is a guarantee that cancer will stay away....and I'd be lying if I said I don't think about that possibility often.  I know several who have had it come back and I know it is real and scary.  But I am trying to find a balance.  Focus on things that are good for me regardless.....the things I talked about....exercise, eating right.....finding a way to control stress and use my faith as a guiding light and source of "calm."  Otherwise, all I can do is move forward and not think about the what ifs too much. Easier said that done, but I really don't have a choice.  As in most homes ( I suspect), Mom sets the tone, and when Mom is down, the family is down.  That is the case in ours.  We are all happy to be on this uptick and the plan is to keep the upward momentum going.  That is our hope and our prayer.

No More Drains!!

I am exhausted but I just wanted to post that my final drain was removed today!!  Day 20!!  I am so happy to have it out.  And the best part....it hurt the least of all upon removal.  I think that was because it was more superficial.....nodes aren't too deep.  Anyway.....praise the Lord.....the drains are gone.  It was so freeing to get rid of it.  There is a bit more story to tell but it will have to wait. 

Only other news related to this......I received my first "infusion" of saline in the expander today.  That is a funny story, but it will have to wait also until I have a little more energy and time.  But.....those are the highlights!  Oh - and I am down to Advil only as far as painkillers.  Yay again!

I hope you are having a great day.  Don't forget to slow down and enjoy life.  It is a precious gift.  :)

Sunday, Day 18

This week has seemed a little busy, with a couple of appointments and I guess the fact that I was more coherent made it feel busier.  I am still on my restriction of only taking care of myself....no lifting over 5 lbs, cannot raise arms up too much, obviously no driving, cooking, etc.  We went to see the lymphedema physical therapist on Tuesday.  My mother in law and I just love her.  She is so calm, and just has one of those very zen personalities....like nothing ever rattles her.  I received my special compression sleeve and glove.

Only my finger nails hang out.

This sleeve goes from wrist all the way to top of arm.  

I can put the glove on by myself but the sleeve is a two person job at this point.  It is really tight, more so toward the hand then less so at the top, but still tight there, too.  The idea is to encourage the flow of lymphatic fluid back UP my arm.  After having 12 nodes removed (not to mention the two sentinel nodes from the summer), the goal is for the broken pathways to grow and reconnect themselves with other lymph nodes.  They did not take everything out from under my arm the way they did back in the 70s and 80s, so there can be new paths to those remaining nodes, or new paths can be built across my chest to the nodes under my left arm.  It is pretty fascinating to keep learning more and more about the human body and how miraculous the whole creation is.  It is SO complex, and the body has so many ways it can work to heal itself.  Obviously, sometimes it needs a little help (haha), but really, I must have forgotten most of what I ever knew about the inner working of the body because I have just loved the education I have been getting about how things work together.

For now, I am to wear this sleeve two hours a day.  It doesn't bother me.  The glove starts to bother after about an hour, and so I give myself a break before my fingers start turning purple.  The therapist  remeasured my arm and in fact, my right arm was slightly smaller than my baseline.  She said that is not uncommon because it only takes 12 hours of "no use" before muscle begins to atrophy.  12 hours!!!  That sounded crazy to me.  And scary.  So we went through a few very gentle exercises that I am to do each day.  She said there is no reason why I should lose any range of motion after all is said and done.  At this point the exercises are as simple as remembering not to hunch over when I walk (a natural response to pain/trauma).  I am to pull my shoulders back and breath deeply and really oxygenate the chest area.  This is a really good feeling stretch...reminds me of yoga.  The others are all about slow arm movements and trying to increase mobility without disturbing the regrowth of the lymphatic system.  

On Thursday I saw Dr. Woods again (the plastic surgeon and main guy for me now, other than the oncologist).  I knew two of the drains would be removed for sure because their output was really dwindling.  We were concerned about one drain on the right, though.  As luck would have it, the drain was named R2 (like the wig).  Maybe I'm the only one to find humor in that.  ( The drains were identified L1, L2 (left) and R1, 2 &3.)  Anyway, sure enough, R2 had to stay.  She had been a problem all week....clogging and then leaking, causing us to have to milk the drain many times through out the day, driving me crazy with the dripping.  BUT...I trust Dr. Woods and I know how painful it would be to remove the drain and have that fluid gathering and trapped inside me.  Remember the lumpectomy??  I had no drain because only two small tumors were removed and the pressure build up from the fluid was very painful.  And, he explained that this was the drain (R2) put in by Dr. Barber, the one connected to the node removal site.  Apparently, breast tissue removal drains a lot less than node removal.  Who knew?  So, this was not strange or unusual to him.  I was disappointed, but I went into the appointment prepared to accept what he decided with a good attitude.  The good news?  When Dr. Woods ripped out the other two drains, it didn't seem QUITE as bad as the week before.  I mean, it still hurt like Hades, but still a little better.  I guess I yelled out "Holy Moly!!" when he did and while I was seeing stars (from the pain) he joked with me about how that's what girls from TCU must say and that if I'd gone to UT (University of TX) I might have yelled out something else entirely.  It made me smile and laugh, and I am so glad to have another good doctor who has a personality and doesn't take himself too seriously.  Of course, then I had to ask him where he went to school and when he replied Princeton I had to give him a little jabbing about the Ivy League footballs teams.

So, I have been relatively active this weekend in terms of moving around the house and getting up and down the stairs with no problem...pretty much doing what I want except not using my arms too much.  But, it's funny how much you really do need your arms!!  Even cutting a piece of meat is like, ok, I can do this but I feel it all the way up my arm in an uncomfortable way.  And I am so glad my sweet husband bought me a mechanical toothbrush, so I can just hold it up to my teeth and they get brushed.

The only other things out of the ordinary are the fact I developed a rash that we believe is due to the first antibiotic I was on.  I have already forgotten the name.  I am allergic to amoxicillin, which includes all of the "cillins" and the rash manifested the same way it did back in college when we learned of my other allergy.  It started with itchy bumps on the back of my neck and spread to my back, then my stomach and shoulders.  It really wasn't too bad, but Dr. Woods changed me to Cipro (another antibiotic) which I have taken many times for ear and sinus infections.  In case you didn't know, the antibiotics are to prevent any infection while I have the drains....an open hole in my body at a surgical site.

However, the bigger deal occurred shortly after we left Dr. Woods' office on Thursday.  He had re-bandaged under my right arm where the final drain remains, and he seemed to use the same materials as last time.  It was a nice waterproof bandage that he then coated with some liquid that he said would seal up any small holes that might remain to make the bandage completely waterproof (so I could take showers).  There was a different, smaller bandage under my left arm.  Even before we arrived back home I was itching like crazy under my right arm, and a little under the left.  I have a decent amount of self control, but this was impossible not to itch.  But, I was also due for a new round of medication, so we got through dinner and I took a bunch of medicine and went to bed.  I woke up around 3:20 and was itching and itching under my right arm again.  I wanted to rip the bandage off, but it was the middle of the night, and just the act of sitting up hurt, so I took a bunch of Advil and went back to bed.  The next morning Jean and I looked at it, and I had hives all around where that new waterproof bandage was.  The drain was leaking again anyway, but we wanted to get that thing off of me as fast as we could.  Oh my goodness, I almost cried with relief.  I had been up half the night fighting the urge to itch and half winning, half losing that battle.  I didn't want to wake up Chris because I knew he had to leave at 5:30 anyway for a busy travel day.  Everywhere that the sticky part of the bandage touched was raised and red and very inflamed....clearly some new kind of reaction.  I was still itchy but it was so much better.  We treated it with Benadryl and hydrocortisone cream and it is still there but not so angry looking.  This might be TMI, but here's a picture.

Good note - the incision from the node removal is healing very nicely.  You can see a little black thread there, and of course holding the drain as well.  Otherwise - ugh!  Looks terrible.

As of today my mindset is good.  My hair is growing pretty well.  I will definitely be debuting a little pixie cut of some sort as soon as I don't look like a boy.  My eyebrows are so funny looking....starting to grow ALL over (remember I explained my terrible unibrow situation in some previous post)?  So now I have some eyebrows wanting to grow almost down on my eye lid, but they are not really long enough to pluck - AND I'M SO HAPPY THEY ARE THERE AT ALL!! - yet no one wants hair in all the wrong places.  Ahhhh.....at least these are so much better "problems" to be dealing with.  To pluck or not to pluck.....or really WHEN to pluck, I guess.  And I have teeny, tiny lower lashes that have grown in.  I am so happy about that because when there were no lower lashes at all it just looked so sickly.  I always used that very light brown pencil to create the illusion of a lower lash line, but nothing beats the real deal.  And my top lashes look funny.  There is a row of short little lashes, but on each eye there are about 5-8 lashes that just held in there through it all and never fell out.  So proud of those guys!  Way to hang super tough.  So if you look closely I have these itty bitty lashes with a few "scraggly looking" ones (the tough ones) but I assume the new ones will catch up with the old before too long.

I am trying to get more active while staying within the doctors parameters.  Tomorrow will be a bit of a test.  I am so proud that Jonathan was selected as one of four 3rd graders to represent his school at a Spelling Bee down in Locust Grove, GA, about 50 miles from home.  None of the grandparents are really keen on highway driving, plus the in-laws could really use the break, so I am planning to catch a ride with a new friend down to the bee.  But this will be a much more active day with less down time than I am used to, so I am interested to see how it goes.  I am definitely planning on brining extra painkillers for just in case, and I still haven't worked out an outfit where I can disguise my lovely drain.  Plus....I need to get myself in gear for Space Camp anyway.  Did I write about that on here?  I cannot remember anything from one day to the next!!  I can't stand having scrambled brains!!  But anyway....I was selected to chaperone the 5th grade trip to Space Camp in AL - two overnights!! -  and I need to get myself in the best place that I can physically for that since I know it will be exhausting.  But I am so excited about it!!

Sooooo - I see Dr. Woods again on Tuesday and I really, really want this last drain to be removed.  The output this weekend has been less than last week, so I am feeling cautiously optimistic.  He said we can change the appt to Thursday if I am putting out more than 25 mL a day.  I go back to rehab on Wednesday, so we will see what she says about my arm and my motion.  I have no reason to think it will be anything but positive.  I received my bloodwork back from my Herceptin appt from the Thursday before last and that was interesting.  My red blood count is still below normal.  And my lymphocytes (part of white blood count) are way down.  I am still taking the mega doses (Rx only) of Vitamin D to get myself into a normal range for that due to the link with low D levels and breast cancer recurrence.  But overall.....things are  finally feeling better.  Mentally, I have reached a better place over the last few days I think.  It has been nice to have family here to talk to and play games with, etc.  Plus, the sunshine has been a bonus.  I have been out of bed and that makes a huge difference.  I will end with a photo you might have seen on Instagram.  But I can't resist.  Here is my sweet Coco.  She is my constant companion and just a snuggly, sweet old girl.  We have spent so much time together and I talk to her and she is such a good listener.  :)

Fur baby Coco....always taking care of Mommy.