Thursday, February 25, 2010

Glowing - no, exhausted - yes: Radiation side effects

Today I had radiation treatment #18 (out of 33). I started seeing some side effects last week. First, the skin is a very light shade of pink - not too bad - and it is starting to feel a little tight. It doesn't bother me throughout the day but when I lay on the radiation machine "couch" and put my arms above my head I feel it then and the position is just not as comfortable and tolerable as it was previously. Not terrible though and that should gradually worsen as I get further along. The radiation induced exhaustion hit me this past weekend, like a brick wall. I am so glad Bob was home when it did because he was able to take charge of Cooper for me whenever I needed to lay down and he let me sleep in and get naps in each day which I really needed and appreciated. It's a different kind of exhaustion than the chemo fatigue, but equally annoying. Another lovely (NOT) side effect that started around the same time as the others I just mentioned is in the digestive department. I'm not going into details but it's not uncommon for adjacent areas of the body (such as the stomach) to be effected by the radiation beams. Even with tomotherapy which is more precise and targeted, there can be "scatter" radiation to parts close by. Dr.Z said some people get nausea, others get what I have gotten, while yet others get both or none. Yeahhhh...not liking it. I was (still am) hoping that it's a stomach bug and not the radiation because I can't imagine this continuing for the rest of the treatment duration and/or longer - not fun. Bob handed me an over the counter remedy which I started taking last night so hopefully it will help. Ah the joys! ;/ My arm is doing well and seems to be responding to the compression and drainage therapy I'm doing. I'm super sick of wearing this thick compression gadget on my arm and hand though and last night I swapped it out for the firm compression sleeve and glove that is used for maintenance because it was driving me crazy. I need to put the other thing back on but I have to wash and dry some of the parts first. The items that make up the contraption are pricey so I only have one to work with and I end up wearing it for 3-4 days and then need to wash them but they take forever to dry (can't go in the dryer) which is great in that it feels great to not have it on but it's not great in that it's time I'm not compressing the arm as much as it needs to be while I wait for the wash and dry to finish. Eventually I need to buy a 2nd and 3rd set of some of the pieces but right now I just don't want to part with the money. My PT'ist/Lymphedema specialist says that the arm is looking much better and responding well to treatment so I'm quite happy and relieved about that. Love and blessings to everyone, Julie

Wednesday, February 24, 2010

Monday, February 22, 2010

Hanging up the cape - for now...

...the Super Woman cape, that is.
Lymphedema, on it's own, isn't a show stopper. But when I add it (the 3x/week PT and 2x/day home therapy involved) to daily radiation, work, church, family/toddler care and of course necessary healthcare/lifestyle changes, etc., with Bob away so much of the time, things (I) began to unravel last week.
I was certain I could do it all - kick cancer's butt, be employee and mom of the year (ok, not exactly), and so much more. Once that arm swelled up and the radiation fatigue set in, the game changed. The drive, the desire, it's there. The endurance, the energy, the physical ability, the sharp brain power - not so much. No matter how much I try to ignore it, I have to admit that I'm impaired right now.
After several days of agonizing over it, we've concluded as a family that I've been trying to do too much, too soon. I'm not even done with treatment. It would not surprise me if the lymphedema was a sign from above that I needed to cut the crap and acknowledge that I wasn't taking proper care of my health needs when that should be the #1 priority - that I was jumping in too soon in my quest to achieve "normal" status again. I'm listening. I'm grateful. I'm hanging up the cape for eight weeks as I step out of work and focus solely on my health and finishing treatment. I'm so incredibly blessed and grateful that my colleagues and management team at work are fully supportive of this decision. What a blessing! Praise God for answered prayers and the most amazing support network a person could ever hope and pray for. Thank you!
For the next eight weeks my full time job will once again be to finish (radiation) treatment, to establish a wellness routine that resumes my warrior nutrition and supplementation, physical therapy and exercise as my body permits, rest and more rest in between my many appointments, deal with the mountain of paperwork (medical bills, disability forms, etc.), and more rest. Because, I don't want to, and can't afford to, blow past this critical time to get it right.

Sunday, February 14, 2010

Acute lymphedema. Bandaging. *sigh*

In the scheme of things, what's one more little bump in the road, right? I had my first PT session yesterday with a lymphedema specialist. Richelle is awesome - she really knows her stuff and is very kind and compassionate too. She is treating me at her home office so that I won't have to travel all the way down to Westwood several times per week which is where most of her patients go for treatment - this is saving me 25 miles in L.A. traffic (each way). She has a great setup in her home and I don't have to battle an overcrowded parking lot or parking garage like I do for all my other doctors and support group visits. Upon measurement and evaluation, Richelle seemed to think that my swelling may have started a long time ago but gone unnoticed because it's not severe and most people can't actually see it when they look at me - mainly because the worst part is in my upper arm and in my side where I'm usually covered up given it's winter time. Even when I took my shirt off for her to see more closely she said it wasn't very noticeable to the eye but when she measured my arms to compare them it was nearly an inch difference between them. Since my left arm is the affected arm and I'm right-handed, this difference is actually considerable. Usually the arm we use the most is bigger than the other - in my case my right arm is smaller than the left, in spite of being right-handed. My skin/tissue in the left arm is not "pitting" the way it would in the earliest stages of developing lymphedema and that's not a good thing because that indicates that it has been swollen long enough to make it less reversible. Richelle gave me a crash course on the lymphatic system. At times I wanted to stick my fingers in my ears and yell "lalalala" because even though I've been stuck, poked, prodded, and had my share of icky procedures I just was queasy at the thought of all that lymph fluid routing around, then becoming stagnant in my arm (putting me at risk for infection), and the occasional icky cancer related thought that creeped into mind while she described the placement, function and direction of lymph nodes, fluid, etc. So here's the program. For two weeks, beginning Tuesday, my left arm will be bandaged from just below my armpit dow to the knuckles on my hand, using compression bandaging. I will wear it 24/7 between physical therapy appointments at which Richelle will unbandage it, treat me with exercise and lymph drainage massage and then rebandage it. I'll see her three times per week, or more if needed, depending on the progress made. Progress will be evaluated by the measurement of my arm. Monday or Tuesday morning I need to discuss this with Dr.Z (radiation oncologist) and make sure that it's OK to have the bandage on during radiation treatments. I'm not at all excited about having it on, period - but especially not excited about having it on during radiation treatment since I have to lay with my arms over my head and stay perfectly still for about 12 minutes (5 min of position scanning, 7 min of radiation) which is challenging enough without some itchy stinky and stiff bandage on my arm. In addition to the two weeks of bandaging, I have a 10 minute exercise and massage routine I have to perform at home twice a day - forever. I'm choosing to view this part of the program as my forced meditation time which is good since I struggle to get that into my routine right now. I'll put a Bernie Siegel meditation on while I do the lymphedema routine which is pretty simple and take care of both things at once. Thank you, God, for helping me to see this swelling before anyone else could. Thank you, Lord, for helping me find Richelle and having her in my insurance in-network program so that I won't go broke getting treated. I'm grateful for the many miracles You perform in my life every single day. Love, Julie

My letter to the editor has been published!

Our local paper has published my letter regarding the planned cuts to the CA breast screening and treatment programs. You can see it here.

Friday, February 12, 2010

Radiation: 8 down, 25 to go -- hey what's up with my arm!?

Radiation update: So far, radiation treatment has been going well. I get in and out of there rather efficiently. Well, except for the parking situation there but I'm not "going there" right now because I'm focusing on positive stuff right now. ;) Every day, Monday through Friday, I drive a few miles to the radiation oncologist's office for my seven minutes of zippity zap radiation treatment. I arrive bearing gifts for the office staff and therapists every day because I love making people smile and laugh - especially people who see a variety of patients and prognoses daily. Physicians' office staff, therapists, nurses - they're on the front lines of this battle. They can make or break a patient's day, and vice versa. I choose to be the one that leaves them smiling and laughing. Ut oh, lymphedema: On Monday night while getting ready for bed I noticed my left arm was feeling a little bit heavier and bigger than usual. I put the compression sleeve and gauntlet glove on as a precaution and in the morning I took measurements to compare my arms. My left arm was 3/4 inch bigger than the right one. It has begun. The dreaded L word: lymphedema. Dang! ;/ When a person is at risk for developing lymphedema due to the surgical removal of lymph nodes, their risk doubles when they have radiation treatment to the affected arm/area. My risk went from 25% to 50% chance of developing it. I was seeing the radiation oncologist that day (Tuesday) so I showed him and I as I suspected would happen I received a Rx for physical therapy and manual lymph drainage massage for the treatment of lymphedema. I've been wearing the sleeve/glove around the clock ever since. *sigh* Thankfully, the sleeve has helped bring the swelling down to 1/2 inch. I got in for a PT consult yesterday, and tomorrow is my first session with the specialist. I'm so happy she works on Saturdays ;) and that Bob will be home with Cooper while I go. She's supposedly the best in the business which is good because there aren't very many certified lymphedema specialists in southern CA. Overall: Other than the arm business, things are good. I feel pretty good - still tired more than normal and that will worsen as I get further along with my radiation schedule. So far, my skin is holding up just fine. I hear from others who have been through radiation that it takes between 2-4 weeks of treatment to see much affect on the skin. Hair!: My hair is growing back and I joke that I feel like a human chia pet. Remember those!? I have been annoyed with the hair because it has been sticking straight up and won't "stand down" for me - at least not until today when I decided to grease it up with a palm full of shea butter cream. So, it's standing down now with an "enhanced" slick look haha. It's a tradeoff I'm willing to endure while it grows out. I was just so tired of seeing the fuzz standing straight up like that so I had to do something. I'm pretty sure Bob was convinced I was going to shave it all off again because I have said many times that I feel I looked better completely bald than with this fuzzy chia pet look. But I meant it when I said I had shaved it for the last time back on Dec.17th. Vitamin D check: I had my vitamin D blood level checked and was surprised to find my level was still well below the recommended level. I was a 44 and experts say it should be over 60 but even better if closer to 80 based on studies looking at the link between cancer and vitamin D. I was surprised to be at 44 since I take 2000 iui of D3 daily. I called Dr.Hardy for advice and she recommended I double my supplement level and recheck my level in 4-6 weeks to see if it has helped. Kidneys: Additional blood work results are in and they look pretty good. My white cell count dropped back down to just above 4 which surprised me since I was above 6 in January. My red cell count is good but my platelets are on the low side - but not too bad. One number that did concern me a little was my bun/creatinine ratio which was high but it could be because of the protein-only diet I had the 24 hour period before the test (which I had to do for the PET scan), but it could also be other things. I'm going on the assumption that it was the protein intake since doc hasn't called to discuss it with me and he's seen the results already. I've left a message for him just in case but I won't hear from him til middle of next week. I imagine we'll recheck it when I have the next blood draw to recheck all my other numbers in a month. I have faith in God - He will protect me and get me through all of this as He has thus far, with flying colors :). Fun weekend ahead: We have a fun weekend planned with trial toddler gym and music classes tomorrow and then Sunday worship and the start of a new small group meeting Sunday. Bob will be home this weekend and it will be great to spend some quality time with my boys :). I wish you all a blessed weekend! Love, Julie

Monday, February 8, 2010

Healthy immunity boosting breakfast

Omega-3 rich eggs with a healthy veggie mixture that includes: green kale, red peppers and onions sauteed in olive oil and garlic, turmeric and black pepper. 100% organic ingredients which studies show boost the body's immunity against cancer - especially breast cancer. It's pretty yummy too!
Sent from my Verizon Wireless BlackBerry

Wednesday, February 3, 2010

Radiation Day 1:Introducing Esther & Eshean

Radiation treatments began this morning. I arrived excited and ready to begin this next important chapter of my cancer ass kicking journey. I grabbed a bag of Smarties (the candy), my list of daily supplements (they wanted me to bring it - though they never asked for it so I'll bring it again tomorrow), and headed out the door.
My appointment was early - 8:45 am - so there weren't many people in the waiting room, just one other patient. He wasn't interested in the Smarties I brought in (he's diabetic) and I confessed that I don't eat candy myself anymore but it feels good to give so I invited him to take a handful of them to give to others that he encountered throughout the day and he dug right in.
A minute later I was being whisked to the back and peppered with questions about what I was wearing under my clothes. If I didn't know better I could have mistaken the questions for dating propositions haha. I knew where they were going with the questions and I proudly exclaimed that my new knockers no longer required hoisting apparatuses (aka bras) and thus there was no metal on my person other than the cross around my neck. I was delighted to learn that I could wear my cross necklace during the treatment.
I said hello to Esther (that's the name I gave the TomoTherapy radiation machine - a Biblical name meaning "star") and Eshean (the name I chose for the customized cushion I will be resting my head and arms on during the treatments - a Biblical name meaning "support") and I laid on the machine "couch" which is basically a hard table with Eshean on it for me to rest my head and arms in (raised over my head). Eshean was covered with a warm sheet and when I laid on him another warm sheet was placed over me as they lined me up to the alignment laser beam. They lifted my shirt to locate the tattoos they gave me for aligning with the beam, then lowered it and covered me up again and left the room.
Once the therapists (Joe and Mary Beth) were out of the room, they began the CT scan portion of treatment and the "couch" rolled me and Eshean into the big donut section of Esther where I stayed perfectly still for the scan and also during the brief pause between the scan and the radiation treatment. During the pause, Mary Beth came in and entered codes into Esther's control panel and left again and then I spent 7 minutes being radiated. I couldn't see the beams but I could hear them at work.
During that 7 minutes I thought about how relieved I am about the PET scan results, and how amazing God is for creating chemotherapy and radiation treatment, and of course the brilliant scientists and physicians He worked through to make it happen. Then I thought about how my left arm was going numb like it usually does if I have it raised above my head or if I'm leaning on it even the slightest bit. I began to wonder about whether the radiation treatment would cause lymphedema (it's a stated risk), and how safe it is that I'll be having 33 CT scans over 7 weeks. Then I remembered to not worry because He will take care of me no matter what. So I resumed breathing and the 7 minutes were over rather quickly and the "couch" rolled me out of the machine as the therapist reentered the room and handed me my schedule for the next 32 sessions.
I felt fine but by about 4pm I noticed my left breast and back of my armpit was already a faint shade of pink. Seems like it's a bit early (after just one treatment) to have color show up but I have faith that it's OK and I just keep putting on the greasy ointment to keep the skin moist and cool. I'm pretty tired - I'm sure it's not because of the treatment but rather the emotional release of the past 24 hours. I am going to bed early tonight - that's the plan anyway. Hopefully I can follow through and be in bed with lights out within the next 30 minutes. Another big and busy day tomorrow with a follow up appointment with Dr.G at UCLA, followed by support group and then radiation treatment #2 just before dinner.
Wishing you a blessed night,

Tuesday, February 2, 2010


It's been a long time since I've had a good HAPPY cry - instead of out of fear and worry. I'm making up for lost time there as I can't seem to stop crying tears of joy since hanging up with Dr.B who called to inform me that my PET scan was NORMAL. Thank you, God! Thank you all for your prayers and words of encouragement. It means the world to me to have your support. Breathing a huge sigh of relief, Julie