Chemo Updates (1st Treatment, Days 9 and on...) & Vote on My Wig!

The tides have changed, friends. Hallelujah!


Day 9 was Thursday. I woke up, shifted my weight in bed and was instantly struck by one simple thing: no pain. I stood up; no pain. I thanked God for yet another blessing. It is amazing how quickly the side effects come and go. I'm so grateful that they go.


I've been spending the days since (today is day 15) trying to pack in as much family time, fun and work as possible. I do still get tired really easily and I'm sluggish in the mornings.  Many things still taste strange and my beverage choices are limited, but I'm getting used to these changes.


The newest change began on day 13, in the evening; I've started to lose my hair. I first noticed the loss of some body hair which prompted me to run my fingers through the hair on my head. Sure enough, about 20 or so strands came out, all entwined in my fingers. I've read many testimonials about women going to bed with hair one night and waking up bald, all their hair on their pillow the next morning. I went to bed on Day 13 worried I would wake up bald the next morning, despite the chemo nurses assurances that it was unlikely based on the amount and texture of my hair (I have/had coarse, thick hair and A LOT of it!). I still had a full head of hair on Day 14. I'll confess I've been waking up throughout the night to check. I'm not quite sure if I am disappointed or relieved when I find that my pillow isn't covered in hair. Every time I run my fingers through my hair, more and more comes out. Enough each time that I can notice. My part is more pronounced now, wider and whiter than before. Losing your hair to chemo doesn't hurt, at least not physically. My scalp has a strange feeling, a little like having a thin headache all over your scalp, but no deeper, and it occasionally tingles in spots, which prompts me to touch my hair, which is followed by more hair loss.  It's nothing like I've seen on T.V. or in the movies. It's quite a bit slower and less pronounced than when dramatized by Hollywood.


My plan was to go to the wig shop today. Sheila (from Sheila's Wigs) met with me last week and we narrowed down a selection. She said to come back today and if my hair hadn't fallen out completely on its own by today, she would shave my head so she could measure and custom fit my wig. That plan has been derailed by a freak "snow" storm here in the south. Everything is shut down because of the snow and ice, and travel on the roads here isn't safe. I'm quite experienced at driving on ice and snow, and even I know it wouldn't be safe to venture out today unless required or really necessary. My wig will have to wait and in the meantime, I will have to find another way to cope with the loss of my hair.


In the meantime, I thought I'd take a vote on the wigs, I've narrowed down to 3 choices, though I might consider a 4th that Sheila wanted to show me.  If you feel inclined, I'd love to hear which wig you think looks the best. Here are the choices:


Wig #1: Brown, layered. Very similar in texture and color to my own hair when it was longer.

Wig #2: Dark Blonde. This style felt more natural to me, but the color might be a stretch. I've always wanted to go blonde, though....

Wig #3: Reddish Brown with bangs. This one is very soft and natural looking. Just not sure about the bangs...

Also, I've decided that since I can't take control of my hair loss journey the way I'd planned to, I want to share what this process is like. Some of you may just be curious, and that's fine. But I'm hoping that maybe one day, someone facing this journey might find this helpful. I've worried over losing my hair so much. Maybe the reality of it is less upsetting than what our imaginations make of it. Here are some short videos of what it's been like to lose my hair over the past few days:

Day One of Hair Loss Video:

http://www.youtube.com/watch?v=9mWkBS7Idqg&list=UUzjO1MJu_-_MpH7mnB1JsPg&feature=c4-overview

Day Two of Hair Loss Video:

http://www.youtube.com/watch?v=tiEDgznDHBw

Day Three of Hair Loss Video:

http://www.youtube.com/watch?v=VOPUTSVq5Fc

Quick selfie. Get used to seeing me in hats, people!

Chemo Updates (1st Treatment, days 4-8)

Let's see... day 4 was Saturday. It was very early morning when I wrote my last entry, and the "fun" had not yet begun.  I spent most of Saturday in bed or in the bathroom. Sunday was more of the same. By Sunday night, I was so tired and weak.


Not that you want too many details, but the "tummy troubles" I've mentioned... well, that's just a euphemism for diarrhea. Like clockwork, I spend early morning and much of the evenings in the bathroom. I knew that the cells in our stomachs and digestive tracts were rapidly dividing cells, which means they are prime targets for the chemo. I guess I just assumed that I'd feel more nausea than anything else. Instead, I have diarrhea. It's been among the worst of my side effects. At least until there was bone pain, but I'll get to that in a minute. My belly hurts, I'm full of gas and the sudden pangs send me running (ok, hobbling as quick as I can) to the bathroom.


So, other than feeling weak and constantly going to the bathroom, the weekend seemed uneventful.  Doug took Charlotte to her first play at Thalian Hall which she really enjoyed. I hated to miss out on that, but I'm glad they went and had fun. By Sunday night, I knew I was getting into troubled territory.  You see, everything tastes different. I wouldn't say it's all metallic tasting like I'd been warned, though plenty of the foods I try to eat taste exactly like metal. It's more that EVERYTHING tastes different and it seems that all fluids have a "fuzzy" texture to them, like I'm trying to drink cotton balls. I've had a hard time figuring out what tastes good enough that I can get it down. By Sunday evening, I was getting worried. My fluid consumption was way down and when combined with the diarrhea, dehydration was looming. 


I was feeling so incredibly weak and tired by Monday morning, and the tummy troubles had been particularly bad that morning that I decided to call the doctor and see if there was anything that could help. His nurse told me to come in right away for fluids. When I got there, they took blood and the results were a bit frightening. My white counts were way down. The average person has between 5,000-10,500 neutrophils (part of your white blood cells). I had 900. Combined with dehydration, diarrhea and the constant low-grade fever I'd been running, I was on the brink of a hospital admission. After a full liter of fluids, I still wasn't hydrated (they measure based on urination and since I still hadn't gone after 2 hours and a full liter of fluids, they knew I needed more), so the nurse hung a half-liter and I just sat around and waited. Eventually, they let me go home, but with stern warnings to stay hydrated and to stay away from germs. With white counts that low, a simple cold could send me to the hospital.


Now, throughout the weekend and into Monday, I was experiencing "bone pain" or an achy, sore feeling in my lower back and hips, knees and ankles. I relate the feeling to early stage labor pains, that point when you're uncomfortable and wiggly but not yet really in terrible pain. The chemo nurses explained that the Neulasta shot causes bone pain because it tells your bone marrow to make more white blood cells and this, apparently, hurts. Even though it was uncomfortable, I didn't think it was a big deal. But then, all of a sudden it went from bone pain to HOLY CRAP SOMEONE'S RIPPING MY BONES OFF pain. Really. The first time it happened, I was in bed and went to adjust my position. I was in mid sentence when this piercing pain tore through my leg into my hip. And then it was gone. By Tuesday night, this pain had become a near constant. I made my way downstairs to eat dinner with my family on Tuesday night only to find myself sitting at the table, feeling hopeless and scared because I'd tried to stand up to get something for Charlotte and my hips actually felt like they were going to split apart. So now, I'm pretty much stuck in bed until this part passes, except that, well, the diarrhea is still an issue. Those emergency trips to the bathroom are even more interesting now.  I called the doctor today to see what could be done (the side effects lead to more meds, which lead to more side effects, which lead to more meds... yeah, that's fun). He called in some prescription strength anti-diarrheal meds and told me to restart the Oxy for pain. As a bonus, the Oxy is likely to cause constipation which could resolve the diarrhea issue without the need for more meds.


For now, things aren't great. But there are some positives worth mentioning; chocolate ice-cream, which I NEVER liked is now a daily staple. And V8 VFusion Fruit Punch (at least there is something I can drink). Everyone's been so generous, willing to get me any food or drink at the drop of a hat just so I'll eat or drink something. Also, Doug got me a nice lap desk, so I can work from bed. It's the little things, folks. I'm really looking forward to feeling a little better each day. Fingers crossed for that.

Chemo Updates (1st treatment, days 2-4)

Day 2 of chemo and we were off to see my OB/Gyn. There are a few choices when it comes to removing ovaries, fallopian tubes, uterus, etc. We've decided that a laparoscopic  supra-cervical hysterectomy is the route to take. It'll leave my pelvic floor/cervix in tact so I don't have to worry about my bladder falling out later in life (seems like an appealing choice, no?). That surgery will involve an overnight stay in the hospital and 3-4 weeks recovery time at home. Dr. Foiles is going to discuss the timing of that procedure as part of my care plan with Dr. Kotz, though she seems anxious to go ahead and get it done this year. I expressed my concerns about surgically induced menopause and the fact that I won't be a candidate for hormone replacement because my cancer is hormone receptive. Dr. Foiles mentioned that a very low dose of Prozac (called something else, but I can't remember) has shown lots of promise in helping with hot-flashes, mood swings and the other effects of menopause. After that visit, we stopped in for my Neulasta shot, which only burned a little.


As of day 2, I'm already finding I need more rest than usual. The heartburn continued for day two and I had to pop an anti-nausea pill or two to stay on the safe side. Some other tummy troubles persisted and everything smells like chemicals on occasion. Also, the skin on my face, chest and upper arms is red. I'm thinking that's from the steroids rather than the chemo, but time will tell since I won't have to take the steroids again until the day before the next round of chemo. I didn't drink or eat much on day 2.


Day 3 was more of the same. I spent much of it in bed, with a brief excursion to the grocery store that ended with me heading back to sit and wait in the car.  I feel drained, but restless. I don't like staying in bed all day. My legs want to go, but my energy just isn't there. Eating and drinking weren't too bad today, except that I usually drink a lot of water and now I'm struggling to get some down. I'm also finding that I want cold things, which is unusual for me.


Day 4 is just getting started. So far, I feel ok. Tummy troubles again today. I seem to wake up around 3:30am and have to pee every 10 minutes for the next hour or so. Mornings seem particularly restless, waking up often and not knowing what to do with myself. I have some work to do, so I'll sign off for now and get through that while I still have the energy to do it. According to the docs, today is the day when my blood counts really start dropping. I'll have to be really careful for the next 10 days or so to stay away from germs. My temp's been running between 99.5-99.8. If I get to 100.4, a trip to the hospital is in order. If you're coming for a visit, expect to wear a mask around me.


So far so good!  Hoping it stays this way!

Chemo Day 1: Very Little to Report

Well, there I am, all ready to be infused. We arrived at 8:30am, had blood drawn to make sure my levels were still okay to start the chemo, then got started exposing the port. I've seen pictures of other ports that protruded quite a bit. I'm lucky that mine is fairly deep. I can feel the top of it just below my skin, but I swear that when the Steri-strips finally come off, you won't be able to tell it's even there. I was really anxious about the nurses accessing the port. When I was shown the procedure during the orientation last week, I nearly vomited. It seemed like they'd push so hard, and that entire area feels really tender and sore. It wasn't bad. My 5yr old buddy, Sean, who's been through cancer, taught me all about this process the other day using his "chemo duck." You know I cried as this sweet boy explained what they'd do and what it would feel like as he manipulated this sweet stuffed animal duck wearing scrubs with a Velcro port. He even gave me his Lidocaine cream which helped numb the area around the port. Big help, Sean!  Thanks.

I had two great nurses, Tammy and Molly. They were super caring and attentive and didn't even bat an eyelash as I voiced all my anxiety about pain and the port. They even sprayed me twice with that spray that freezes your skin temporarily. Another big help. They had to try twice to get a good spot in the reservoir of the port, but all I felt was a little bit of pressure. Honestly, I was more relieved that I could move my neck from side to side with more ease once the dressing from the initial port surgery was removed.

They started me off with the anti-nausea meds (30 min drip of Emend) and more steroids to help prevent fluid retention and allergic reactions to the last part of my infusion (the Taxotere). The line is flushed between each drip with saline. The first chemo med was the Adriamycin (pictured below in the syringe). It's otherwise known as "The Red Devil" and you can see why. It's really red. They push this part manually and it only takes a few minutes. It's so toxic that they have to add a mat between the iv line and my arm. Fun, huh?!

The Cytoxan was next, dripped for an hour. Uneventful. Doug came to check on me periodically and I made a few phone calls. I watched some of a movie (The Butler), but felt too distracted, so I'll have to finish it up at home today. I met another patient while there and she's great. I'm looking forward to seeing her smiling face again for our next visit. Seems like we're on the same schedule.

The last part was the Taxotere drip, which they infuse slowly at first to test for allergic reaction. I did really well. Another nurse came by when it was time to change the infusion rate, but she didn't get it right. When my other nurses came back into the room, they realized she hadn't ever sped it up, so they did. Right away I started to smell a really strange chemical smell, which they said was just me. My belly felt warm, but nothing else.

After we left (around 2pm - long day), I started to get heartburn. It persisted most of the night. I also started to feel like a cold was coming on; hot, then shivers, sensitive to the touch, tired but restless. No fever though. And Dr. Kotz even called me from home at around 10pm to check and see how I was doing. I'm so impressed with my excellent medical team. Eventually I fell asleep. When I woke up this morning, all I noticed was the heartburn.  And as I write this, I have the hiccups.

I have to go back this morning for the Neulasta shot (stimulates white blood cell production). Doesn't sound like it will hurt after all. It's a sub-cutaneous shot, in the fat, with a tiny needle. No biggie, right?! We are also meeting with my Gynecologist to discuss getting rid of my ovaries, maybe more. I'll keep you posted with developments. Hoping things stay nice and quiet, just the way they are right now.

Thanks to all for the support and encouragement. I'm surrounded by so much love and I know it and feel it everyday!

 

Pre-Poison Update

I last updated after physical therapy, which was exactly a week ago today but feels as if it happened months ago. I feel like this entire experience has created some strange time warp (or time suck, with an emphasis on the "suck").  In the past week, the tumor board met to discuss my case again (this time with a focus on radiation and which type of chemo cocktail), we met with the radiation oncologist (Dr. Papagikos), had the port placed, had an awesome pre-poison party at mom's house, met with my medical oncologist (Dr. Kotz) so he could be sure that I was ready to start chemo, and had the first "filling" of my breast expanders.




Chemo starts tomorrow. The anticipation is absolutely killing me. Maybe I should find a different way to phrase that... Anyway, with that in mind, this post will be just an update of the details with very little of the real life that I usually like to include. Time is of the essence as there is so much to get done before the impact (if any) of chemo sets in. Here's the news:




Tumor Board: All agreed that I should have TAC for the chemo, which is actually administered as ACT (in that order).  They also agreed that I should have radiation, which I'll cover in more detail later in the post. First, a look at my chemo protocol:




The Adriamycin comes first (well, after they've infused a steroid and some anti-nausea meds) and takes about 5 minutes to drip into the port. Adriamycin is red, often referred to as "The Red Devil" and will make my urine red for a few days. My urine's already been clear, when I drink enough water, and blue from when I've had the radioactive dye, so it would seem I'm shooting for patriotic pee. Yippee. Adriamycin is likely to cause pain at the infusion site and nausea/vomiting, but I'm told nausea and vomiting are rare these days because the docs all have great meds to prevent that and they automatically give them since this side effect is so common. Those are the immediate effects. Later, it's likely to cause low blood counts (white and red) which puts me at greater risk for infections, anemia and/or bleeding. Onset for this is day 7, with the lowest points (the nadir), for this drug, at days 10-14. Mouth sores are also a possibility and hair loss is likely to occur between days 14 & 17.  Darkening of the nail beds, problems with fertility and watery eyes are all additional possibilities.  Long terms effects of this drug include developing a blood cancer (such as leukemia) and heart failure/permanent damage to my heart. At least my Mugascan indicated that I am starting out with a really great ejection fraction, so my heart seems to be in good shape, despite my paranoia over palpitations and irregular heart beats.




Next is the Cytoxan, which takes approximately an hour to infuse. Nausea and vomiting are likely within the first 6-10 hours after the infusion, but again, they have and give such good meds for this that it really isn't that likely. It is likely to cause low blood counts (white, red and platelets) with the same onset and nadir as the Adriamycin. Again, hair loss is likely to occur between days 14 & 17. Poor appetite and a metal taste in my mouth are likely. I've been advised to combat that side effect with plastic utensils. Diarrhea, black or tarry stools, mouth sores, loss of fertility and darkening of the skin and nail beds are also common reactions. Less common, but possible, is hemorrhagic cystitis, which is a painful bladder irritation and bleeding of the bladder.  Long term, blood cancers (leukemia) or myelodysplasia (think Robin Roberts from GMA) are possible.




Taxotere is the last part of the infusion. It drips for an hour. All of the shorter term possibilities above are also likely from this, but the onset and nadir comes faster, with an onset on day 4 and a nadir (lowest point) from days 5-9. Also, add severe flu-like symptoms (fever, which means infection, chills, nausea, vomiting, diarrhea, exhaustion) plus bleeding (mostly mouth and nose), bruising and severe bone pain. Taxotere causes fluid retention and allergic reactions, which is why the day before and the day after treatments, I have to take 4 steroid pills, and they infuse steroids before I begin the chemo treatments. Peripheral neuropathy (numbness in fingers and toes) may also occur, along with fatigue and weakness (which is another common thread for all 3 toxins).




The day after chemo, I'll return for a shot of Neulasta, which I REALLY want to call Nutella. I think I'd much prefer a chocolaty hazelnut spread rather than a painful shot that stimulates my white blood cell production. I've just recently heard that this is a painful shot. I'm curious as to why. Do they inject it into my bone?  God, I pray not!  Anyway, after that, I have 21 days of relatively uninterrupted time to get back to normal before we do it all over again. I'll have a total of 6 infusions over a course of 18 weeks.




Radiation Oncologist Meeting: Dr. Papagikos said that everyone is in agreement that I'm a candidate for radiation for 3 main reasons (and they are linked). First, because I am young. It seems that because I have a longer life ahead of me (happy that!) the potential for recurrence is greater. I think.. Hmmm...  Second, because I had a positive node.  If I were older, they'd want 3-4 positive nodes before radiating me. But because I am young, they only need to see one positive node to want to radiate. Third, because my tumor was so big. When they removed it, they found it was 5.5cm, when they originally suspected and measured it at 3-4cm. Anyway, it's big and growing at an intermediate pace. Also, remember that I had two other nodes with clusters of malignant cells, just not enough of them to officially call them "positive". All of this put together means radiation is going to be part of the treatment plan. The question now is when.  Both of my oncologists prefer I finish chemo, wait until my blood counts return to normal (about a month) and then start radiation. I would have to go everyday, Monday through Friday for 6 weeks for about 15 minutes of treatments and meet with the radiation oncologist once a week to check on my side effects and status. Most likely, radiation will cause burning, redness, irritation, and blisters on my skin (picture a large rectangle from my armpit to the center of my chest on the left side). Also, it will make me feel tired, though I'm told that the tired from radiation isn't AS tired as the tired from chemo. Wrap your head around that for a minute. Radiation causes permanent damage to the blood vessels/blood flow to the area which can impact my skins ability to heal. If I have surgery in the radiated area, ever, I am at risk of issues with healing. Thus, if I wait and have my reconstruction surgery (to remove the expanders and replace them with the silicone implants) after radiation, it could fail, and/or put me at a higher risk of infection. Also, I'd have to go without the nipple replacements surgery because my plastic surgeon won't do it (or any other additional surgery on the radiated area that isn't absolutely necessary), instead heading to a 3D tattoo artist in Baltimore who's the bomb-diggity when it comes to 3D nipple tattoos.  If it fails due to infection or problems with healing, then I have dealt with all of the discomfort and pain of the reconstruction (and cost) for nothing, because the implants will just be removed and I won't get to have breasts (at least not ones attached to my body). If I have the reconstructive surgery first, followed by 4 weeks of healing time (a total of 8 weeks between chemo and radiation), I am basically giving any remaining microscopic malignant cells 8 weeks to grow and gather, which could lead to a recurrence. My friend, Andrea, pointed out that maybe the cells left over after chemo (if any) are the really strong ones (because they've outlasted chemo), and giving them 8 weeks to grow and multiply doesn't seem to be a good idea. I'm torn. I'm ok with never having breasts again, but not ok with having chosen this route only for it to fail because of a subsequent treatment option I chose to do. I'm not ok with not healing and getting infections. I'm also not ok with giving the cancer, if there are still any microscopic cells there (which the doctors are all operating under the assumption that there are) the opportunity to make a come-back. Really not routing for the underdog here. At least I (we) have 18 weeks to figure all of this out.




Port Surgery: Well, I was already anxious about this going in. Not a fan of having foreign objects in my body. I was supposed to go in at 1 and have the surgery at 3, but they called and asked me to go ahead and come in by 9. The morning was a crazy rush and Doug was at work for a training or meeting and couldn't leave right away. Luckily, mom was able to leave work early and come be with me before I went in for surgery. I've been getting really anxious about each new step, finding that my blood pressure is higher than it's ever been, my breathing gets all crazy and I start freaking out about getting IV's placed, which was never a problem until they started failing to place them on the first try, which really While everyone seemed rushed, it went very well. Dr. Weinberg came in to visit with me before the procedure and she has the greatest, warmest smile. She really helps to put me at ease. I decided it wouldn't hurt to ask her if she'd be willing to break up some of that cording/scar tissue in my left arm while I was under anesthesia and she agreed. When they woke me up after the procedure, they asked if I was in pain. "Nope," I replied, and then, "Oh [lifts and moves left arm all around] yes!!!  She did it!"  I still have some cording left to deal with, but I have a HUGE improvement to the range of motion and level of pain in my left arm. Amazing!  She worked hard on the cording, especially the huge clumps of it in my armpit.  If I wasn't already in love with her, I definitely am now. She said the port is placed as deep as she could get it so it wouldn't protrude too much. The area is very tender and I am having some pain and a pulling feeling every time I try to move my neck. I hear that will get better with time. I hope that's true. Otherwise, port surgery was a double success!




Pre-Poison Party: So, earlier in the week, mom had the idea that we should take a moment and really celebrate all the healing so far, at a time when I still felt like being social. She planned an awesome party and invited so many wonderful people. It stormed something fierce that evening. In fact, we were under a tornado watch and a severe storm advisory for most of the time. Still around 60 people attended the party, most traveling 20-30 minutes to be there (in the storm), some out-of-towners, too. It was an amazing turnout. Great food, lots of laughter, great friends, support and encouragement. I felt so incredibly uplifted, I'm not sure I can do it justice with an explanation.  My friend Beth said, with the greatest sarcastic smirk, "Girl, NOBODY loves you."  LOL. I really felt it.  I am so lucky and so blessed to be surrounded by such an incredible support network. I can't say it enough; thank you! My core support team (Doug, Charlotte, Mom, Bob, Dad, Delia, Maxine and Robert) are amazing and I'm incredibly blessed to have them. But then there are so many others, I couldn't possibly name everyone, who call, text, visit and find all sorts of way to encourage, support, and help us. I'm truly touched by the overwhelming outpouring of love! Thank you.






Visits with Dr. Kotz and Dr. Kays: Dr. Kotz, my medical oncologist, wanted to visit with me to make sure I was ready to start my chemo regimen and to confirm, once and for all, that TAC was the route we were taking. He is always so patient and informative. He's cleared me, otherwise no news. Then it was off to Dr. Kays, the plastic surgeon. I was anxious about my first fill, and when I saw the syringe and needle they use for the fill-ups, I started to cry. Doug was awesome once again, goofing around to make me laugh rather than cry. In the end, it didn't hurt, as promised. Maybe it was mildly uncomfortable when he filled my left side, but I felt nothing when he filled my right one. Afterward, I was tender. It kind of felt like when a new mom gets her milk, but not quite as fast or severe. Tender. I was sore and very tired by about 4:00 and in bed early, which is likely to be the norm for me around here. Good thing Doug is good at the bedtime routine. He's a great story-reader!


I'm sure there is more to share, but for now, I'll sign off. Tomorrow is the big day!  I start my chemo at 8:30 am. I pray that it's uneventful. I pray that it doesn't live up to the anticipation. I'm looking ahead with anxiety, but really hoping that all I get is a little tired and weak. Tonight as you go to sleep, or tomorrow as you start your day, will you say a little prayer too?


Oh, I was turned on to another blog written by a friend of a friend and her story is really inspiring and incredible. She's battling so much more than I am, with such grace and hope. Check out her blog if you get some time at anncredible.com  Thanks!


Oh, one last thing. Hair loss in t-minus 14 (-17) days. I promise to get better about posting pics! xoxoxo

Range of (E)Motion

Physical therapy is hard work. I've had physical therapy before, for my knees, and I've been advised by a physical therapist on exercises and stretches to do at home for knees, neck, feet.. you name it. I've been sore from the physical manipulations. I've whined and complained that "this stretch" or "that weight" hurts. Frankly, I had no idea what "hurt" was. Yesterday, I found out.


I've been complaining about the pain on my left side since I came home from surgery. The extender on that side feels really hard and often feels like it's sliding into my armpit. Dr. Kays reassured me this is normal b/c there is a second cavity (not the cavity created from the mastectomy) from the axillary lymph node dissection which is about the size of a tennis ball. The extender has a smooth coating and apparently it shifts around in there. That movement "hurts" and feels really strange. Most of the time it's felt like there's a thick rubber band inside my arm and left torso. If I tried to move my left arm at all, I felt a strong pulling sensation and that was coupled by extreme pain if my arm, particularly my upper arm, was touched at all. The "pain to the touch" issue has started to improve over the past few days. In fact, there are very few spots left on my upper arm that hurt when touched lightly and I only feel sore now when touched with more pressure (more like a bruise, less like a sunburn). I've not been able to straighten my arm fully and I've adopted a protective stance, hunching forward and coddling that left arm and my chest as if I were protecting them from unforeseen impact. This posture, of course, has caused a fairly constant soreness in my lower back and across my shoulder blades. Overall, though, I've moved from constant pain to constant soreness and occasional pain, a welcome improvement. I felt ready for physical therapy. I really want to regain a full range of motion in my left arm. I felt ready to do the work that would get me there. And, since Dr. Kays removed my last drain on Monday (YAY!!!), I'm cleared to start physical therapy. All of this is great news.


I met with Beth at Bodies in Balance on Tuesday. At first we just talked about what I was feeling. Then she started to assess my range of motion. She asked me to stand straight and raise both arms out in front of me (like when you pretend to be Frankenstein). I only had a 40 degree range of motion in my left arm (and I had to keep my elbow slightly bent). I am experiencing what is known as cording. Basically (as I understand it), cording occurs when the lymph channel is inflamed (from the removal of nodes) and starts to build scar tissue around itself along the length of the channel. I have pretty significant cording in my left arm, basically from my wrist, up the length of my arm, into my armpit and down my torso, and some minor cording on the right side, too. That scar tissue, or cording, needs to be broken in order for me to regain full use of my arm. You can actually hear popping as it breaks. Breaking this scar tissue HURTS. The visit wasn't anything like what I expected. I think I was prepared for a great deal of discomfort. This pain easily ranks with some of the worst I've felt. Beth only worked a small area of my forearm and she has a gentle (but firm) touch. All at once it burns, stings, pulls and pops. My legs curled up. I wanted to mash my teeth together, actually yearned for something to bear down on with my teeth. I yelled out and then cried. Sobbed, really. Beth brought me a tissue and mused that when her practice took on cancer patients, she'd had no idea she'd be inflicting so much pain on them. She joked that we wouldn't do too much more because we were in a room near the waiting room and I might scare off her other clients. She showed me some useful modalities I could work on at home; crawling my hand up a wall or across a desk, clasping my hands together and working to lift them over my head, making a butterfly with my arms around my head and working to push my elbows down... Beth asked me to repeat the range of motion assessment before I left. I can straighten my elbow completely and I now have 105 degrees of motion in my left arm, a 65 degree improvement in less than an hour, with little effort on my part, but with significant pain. We all felt pretty enthusiastic about the improvement. Beth reassured me with visible excitement, her broad smile stretched across her face, joy in her eyes. There's definitely more hesitation in my enthusiasm, though. I made an appointment to return on Friday, just before the surgery to place my Power-Port. I want so badly to move normally. I want to get back to taking my arms for granted. But the idea of that pain, knowing I will have to continue to face it until all of the scar tissue is broken, hits me in the gut, makes me feel physically ill. Physical therapy is hard work, physically and mentally.


I wasn't really sore at all after the appointment. I went home in good spirits and moved around a lot. By bedtime I was a little sore and really tired, which likely preempted the range of emotions that followed. I've stopped taking pain meds and haven't taken the muscle relaxers or Ambien on any consistent basis. I don't like to take pills if I can avoid it. I've been managing ok. In bed last night, I worked on stretching out my arm, tried to do some of the exercises Beth had shown me. I kept running my fingers along the length of my arm. You can actually feel the cording just beneath the skin, particularly where it crosses in the crook of my elbow. I started to think about the next appointment, how much it will hurt, how badly I just want to avoid that pain, but the alternative isn't an option I care to think about either. There is this palpable tension, I've felt it before. No choice seems right. I want to question everything. I want to know, but I don't. I just want to go back in time. I want to start over at some point before the genes mutated, before the cancer started to grow. I want to know and to change whatever it was that I did or that happened that led to this. It seems really childish to say, really naïve, but this isn't fair! And then I realized that I had wandered into "Why me" territory. It's a normal, probably expected place to go when you are faced with a serious, life altering change. I've visited there before and realized that I never came out with anything useful or productive. So, why visit again? I've tried to stay away from there. Surely those of you who've read this blog from the beginning can tell that. But as I lay in bed, thinking about the pain, I started to realize how easy it is to fall into a depression, how easily terrible thoughts can enter and leave our minds, how appealing avoidance can seem, how quickly dark thoughts can overcome the light. It scared me, honestly. Doug came in and he could tell I was struggling with something. He asked me to talk about it, but I struggled to find the words. My jaw got tight and my lips trembled. I started to cry and I had to leave the room, come back and just think about breathing before I could talk about what had just happened in my mind.


I'm so lucky to have Doug, and people like him, in my life. People willing to listen, to try and understand, to hold me when I cry, hold my hand when life hurts. He talked me through that dark spot last night. And then, this morning, I Skyped with my very wise friend, Natalie, who reminded me of the tree metaphor, of how the seed breaks before new life can sprout. Then I thought about how cold it is, really and metaphorically, and how spring is around the corner. I'll be finishing chemo late in the spring, when the weather is warm and new life is sprouting all around, and I can't wait to enjoy the sunshine and the light and leave these dark, cold times behind.