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.
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| Ready to board the bus!! |
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| In Mission Control!! |
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| 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.
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| 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.
