Living with lymphedema

Lymphedema blows. Don't get me wrong, I'll take it over cancer any day. But, having lymphedema does suck as it interferes with life every single day. I am not able to lift or do repetitive motion with my left arm without fear of causing it to blow up like a balloon. I can't have blood pressure checks or needles in that arm EVER. I have to wear a compression sleeve 24/7 and at night I wear a special padded sleeve with a compression sleeve over top of that to help aid in channeling the fluid up my arm and down my side.  I have to sleep on my back or my right side - if I fall asleep on my left side or roll onto that side my arm and hand will go numb within a few minutes and that could also lead to fluid build up.  I have to take my wedding rings off before bed and before any type of exertion or exercise so that if I flare up they won't have to be cut off of me if the flare up is really bad.  Edited to add: I also can not get into a sauna, steam room, or jacuzzi because the high heat involved is a risk factor for flare-ups for both those with lymphedema and those at risk for it. That's a bummer because I used to enjoy occasional spa visits - now I have no reason to go to one - the money I save by not going to a spa only gets spent on lymphedema management garments and therapy. ;(

When I have a flare-up, my arm swells up and I can't just carry on as usual - I have to see a lymphedema physical therapist trained in manual lymphatic drainage massage 3 times per week and get bandaged in stiff bandaging (with foam underneath) for a 2-3 week period - bandaged from knuckles to shoulder with several short width bandages that are put on and taken off only for bathing and then put back on again. This has to be done to get the excess fluid out of the arm as much as possible as stagnant fluid can cause infection and can harden up.

Why do I have this? Because I had 17 lymph nodes removed during my bilateral mastectomy and the remaining nodes and channels were damaged by radiation therapy so my left arm has no healthy channel for filtering and dispersing the fluid that naturally occurs and moves through the arm and through the lymph nodes and vessels to the rest of the body. About 1/3 of women who have lymph nodes removed will develop lymphedema. It can happen at any time - 5 days or 5 years or even decades after surgery - even if you take all the recommended steps to try to prevent it.  If you have radiation therapy as part of treatment, you become something like 3x more likely to develop lymphedema because of the damage radiation does to nodes and channels in the radiated areas.

Since I have to wear a compression sleeve around the clock, I have to have several of them. They only last 4 months with daily wear because they have to be washed daily as the natural oils from the body break down the elasticity of the compression fabric.  They cost, on average, $75 per sleeve. I keep 3 sleeves at a time, and because they are sold by specialty medical supply stores which generally don't participate in health insurance groups they are almost always out of network and subject to the out of network deductible that I never fulfill because the rest of my care is always within network. 3x$75, 3 times per year, plus the sleeve and padding and bandages for night time wear and the arm garments alone run me $1000 per year out of pocket.  The therapy, when in network, is $30 copay per session, so flare-ups (I generally have 2-3 per year), costs me another $1000 out of pocket per year.

I haven't even mentioned the "gunky" feeling of having my left arm and left breast be swollen and bigger than my right side all of the time. For me, that's the worst part of lymphedema. It causes aching and a general yucky feeling all of the time.

I am incredibly lucky that there is a wonderful lymphedema therapist within a 40 minute drive of my home - she's the best in the state and trained by the most prestigious school for lymphedema therapy and management. She is a delight to work with and very compassionate and understanding.  She has shared so much knowledge with me to help me understand the lymphatic system and the types of treatment that are effective and the types that some PT businesses use which are harmful so I'll know what to avoid too. Love you, Richelle!!! :)

I'm also very lucky that this is effecting my left arm and not my right side which I rely on for writing and other tasks where I favor my right hand/arm.  Praise the Lord!

Anyway, I brought this up for a couple of reasons - first, a few friends of mine are just beginning their breast cancer journey - surgery, treatment, etc. - and they'll need to get up to speed on their risk for lymphedema and how to prevent and/or manage it if it occurs, and secondly it is time for me to replace all of my sleeves (wallet is weeping LOL) so it is on my mind more than usual this weekend. 

If you would like to learn more about lymphedema, there's a great organization - the National Lymphedema Network - and their website is: http://www.lymphnet.org/

Feel free to comment here or email me with any questions about this. It'll be part of my journey for the rest of my life now that I have it (mine is considered irreversible but in some, though not all, patients if it's caught early enough it can be reversible). 

I hope you are having a blessed Sunday!

Love,
Julie

Radiation side effects: the sequel

19 treatments down, 14 to go. In just the last few days I've begun experiencing a couple of new side effects - one expected, one not. The one I expected is increased pink/red color of the radiated skin. Thankfully it's coming on gradually but it is much more noticeable now and slightly uncomfortable - mainly the strip of skin just below the breast is where it's become sensitive. Dr.Z looked at it today and said that my skin is actually doing better than most do at this stage so that's great. Hopefully that will continue to be the case. The effect I was not expecting is nausea. Certainly not the level that I had with a couple of the final chemo cycles. The other digestive issues I was having earlier (which have since quieted thankfully) was bad enough. For the last three days I've been unable to consume much more than toast, crackers, fruit and hot tea. Of course, the chemo brain I'm sporting these days has led me to completely forget that I have plenty of anti-nausea pills in my medicine cabinet that I could have been using - I didn't even think of it til just now while composing this blog post. Anyway, I've been so hungry so I go into the kitchen to make a meal and find not much I can make that won't make me want to hurl. Even when I find something that I think I can handle I prepare it and then stare at it, push it aside, and then drop another piece of bread in the toaster while I boil water for tea. The thought, sight and smell of vegetables and meat makes me want to vomit. Bob has been a ginger ale pusher for a couple days and while I loathe the idea of consuming the sugar, I have found taking several sips at night time has helped calm my belly just enough to be able to ignore it for a bit. I sure am glad he is home right now while this is happening because when a wave of it hits me it forces me to sit down and clear my mind of food related thoughts, odors and images and the last two days it's hit me when I was about to prepare food for Cooper and had to have Bob take over. In the plus column, I've lost 5 lbs since last week and am now below my wedding day weight. haha! I'm sure once I start taking those anti-nausea pills tomorrow I'll get those 5 lbs right back. Fine by me. I need to get back to my warrior diet packed with veggies asap. I mentioned the nausea to Dr.Z today and he isn't convinced it's from the radiation but he wouldn't rule it out either since it's a known side effect of the treatment. He said that usually when someone has radiation nausea it starts from the beginning. I told him I'm not "usual" :) in any way. He agreed (because I've been charming him and the rest of the staff from day one with my fun and silly gifts and fantabulous sense of humor haha). Another plus column item is that the physical therapy and lymph drainage massage is working on my arm. Most of the arm has returned to normal - just a small section above and below the elbow is still swollen but has also come down. My therapist, Richelle, felt that the progress is sufficient to allow me to stop wearing the stiff padded compression garment around the clock - woohoo! I have to wear it at night but during the day I can swap it for the class 2 compression sleeve and guantlet. Richelle is fantastic, by the way (if you know anyone in southern CA that needs a great lymphedema specialist/therapist contact me and I'll send you her info). She is extremely knowledgeable, professional and personable and is sought out by physicians and patients from all over. We chat through every treatment session and have come up with a couple of ideas on how to increase awareness and education of the risks of lymphedema in breast cancer patients which is needed because most of the surgeons and oncologists don't educate patients about it enough to help them properly avoid it and/or recognize the early signs of it developing. I'm incredibly blessed and grateful for all the wonderful caregivers and tools in my cancer ass kicking posse and the friendship and support of so many. They all make such a difference in my life (and so many others') each and every day. Thank you, God, for these amazing blessings.

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

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

So, here we go!

I have 2 more hours to eat before I must fast in preparation for the port procedure tomorrow. What stinks is that the surgery is at 2pm and yet I can't eat/drink after midnight unless it's water to take pills...seems awfully unfair to me since they'd have said midnight if the surgery was 7am, know what I mean!? So at 11:45 pm, I am going downstairs for another dinner haha. The port procedure will be at UCLA this time so I'm not nervous like last time (you know, when I was going to have it done and had a horrific experience at the smaller hospital in the valley and walked out without having it done). Bob is home from his trip tonight so he'll be taking me down there tomorrow while my parents stay home with Cooper. I expect I'll be tired and sore afterward and will plan to do nothing but crawl into bed and sleep it off when we get back (probably around dinner time). Then, the next morning waking will be my first day of chemo. Wow. I can hardly believe it's time already. In a way it has seemed like ages to get to this point but now that it's here it feels like time flew by. Either way, I'm anxious to get it started since that brings me closer to getting it done with so I can say farewell to cancer and move on with my life - that's my plan. It's going to be a long journey though since I'm having 8 cycles. So, by spring time next year is when this chapter will be over (after chemo, radiation, and final reconstructive surgeries), if all goes as scheduled. It's a bit daunting to think I have a year of this ahead of me still, but then I look back on this past year and am amazed how quickly it went by in spite of the extreme sleep deprivation I endured during Cooper's first year with us - plus the crazy 5 months of bed rest before he arrived -- so if that can be a distant memory to me now, so will all of this next time this year. In preparation for this next phase I've been stocking up on my supplements, organic foods and products, medications for side effect management, hair pieces, scarves, and hats for baldness management, etc. ;) I've been scoping out all the local and online sources of organic products so I'll know where to go when I need something. I got a really cool yet simple black scull cap at a Harley Davidson dealership last week when my dad insisted on visiting this new Harley shop in town (he's a biker). I'm glad dad dragged us in there since I walked away with a couple of cool head pieces that will come in handy in about 2-3 weeks. I've been practicing building up my protein intake since the level of protein I must consume during chemo is more than twice my normal amount, and preparing meals and freezing them for easy access for those crummy days they said might come between days 3-8 of each cycle. I'm signed up for a more suitable support group at UCLA where there are several other women with triple negative breast cancer in my age range, and for one-on-one sessions with a great therapist there as well (what I found locally for those needs just weren't going to be right for me). I start physical therapy for range of motion and lymphedema prevention techniques on the 28th. All that's missing for this phase I think is that I need to start going to the yoga and meditation classes at the cancer support center - I've waited on that so that I can first get instructed by the physical therapist (who has to be certified on lymphedema prevention/management) on what movements are OK for my left arm because, believe it or not, even a slight wrong move or slightly too much pressure (i.e., pressing my palm on the floor and leaning in) can cause lymphedema to begin to develop. I have been so careful with my arm but sometimes I don't realize that certain things are dangerous til I read about it or talk to someone with the same risk. For instance, I'm not supposed to sleep on my left arm, or when seated at a table or desk I should not lean on that hand/arm in any way as it can disrupt the pressure balance and cause fluid accumulation thereby starting the development of lymphedema. That is going to be a challenge for me since I usually do lean on my left arm while doing any activity sitting down - but that's all changing now. Having my folks here has been a huge saving grace for me. They help with so much - with Cooper, around the house, and emotional support when I'm having a rough day, distracting me with simple yet perfectly wonderful outings that help keep me smiling. They're also learning so much about my new lifestyle (organic) and new risks (lymphedema) and on at least a few occasions this weekend my mom has reminded me to "switch arms" when I was about to do something that could be dangerous (pet an animal, put sharp utensils away, reach for something sharp, etc.). I'm so grateful to them for their help and support. I love you, Mom & Dad! So, now here I am - about to start chemo. I am planning to sail through it - to follow my doctors' advice: nutritional, medical, mind/body work, etc...to minimize side-effects and complications...but I'm surrounded by amazing people who love and support me and are ready to help if things should get rough (thank you for being in my "posse"!). I'm ready for this phase of this battle and I'm planning to win. So, here we go!

A new day and another big day ahead

Today was a new day. A much better day than yesterday. Tomorrow will be even better since the drains that dangle from my breasts and which I have been toting around for a week now will finally be removed. They're so incredibly annoying (and gross) - I have to wear a robe with pockets to keep them from pulling out of my body and they itch where they come out and sometimes it burns too. I'm pretty sure the tightening and aching I feel in my chest is the drains too because the pain is originating from the drain holes and not the surgical incisions. Even if the drain removal doesn't eliminate the pain that remains, I'll be thrilled to have them be gone so I can trade in my robe and chest bandaging for a shirt instead. The bandages smell now that they've been on me for a week, and are falling apart too. Doc said I could take it off as long as I keep the drain holes dry and clean but that sounded like a challenge I might not be able to manage effectively so I've opted for the smelly bandage LOL. Thankfully it goes tomorrow morning. :) So, first thing in the morning I'll be at UCLA with mom in tow, having my bandages removed, the drains removed, and getting a refill prescription for the pain meds from the plastic surgeon, Dr.Crisera. After that, we meet with the cancer surgeon, Dr.Chang, to review the pathology (which we already know about), to get instructions for caring for my left arm which is at risk for lymphedema now, get a prescription for a compression sleeve for my arm for traveling or days with lots of activity to protect the arm, and a prescription for physical therapy which I know I will need a good deal of since I have numbing and other weird sensations in both arms ever since the surgery. Once we're done at UCLA, mom and I will head to the store to pick up a couple of new bras for me to use temporarily while my amputated breasts are in their pre-inflated stage (in 2 weeks they'll start pumping up the expanders to stretch my skin in preparation for implants that will be placed later on) since none of my bras will provide any support or smoothing under clothing since all of my breast tissue and both nipples were removed in the surgery. I'm not completely flat since the expanders are in there. I'm not at all freaked out about the strange appearance of my breasts (they really do look like amputated limbs too - very strange) - I was never really attached to them before and in a strange way it'll be kind of neat to see what it's like to be small in that department for a while. Don't tell Bob, but if I find myself enjoying being on the small side I might just put in a request for smaller breasts when it's time to resume reconstruction. I've always been large in that area - so much so that I had them reduced/lifted just 5 years ago because I found them to be such an annoyance and I've always dreamt about having small perky ones so I could occasionally go braless - well I guess my chance for that is here now haha. Anyway, I've had a few visitors today which was great. My friend, Tara, brought her friend, Candy, by to talk to me - she's a breast cancer survivor of over 15 years. I love hearing survivor stories :) She was so sweet and offered for me to call her any time. Thank you, Candy and Tara! For dinner we had my friend, Kristy, and her adorable daughter, Addie, over. We had so much fun watching Addie & Cooper play as they usually do. "Cooper & Addison Olsen" sounds wonderful, doesn't it? haha! Then, our sweet friend and neighbor, Sarah, stopped by too to chat about her availability to help out with Cooper on occasion (she's a nanny/sitter). I'm so incredibly blessed and grateful for everyone's friendship and support. I couldn't ask for a better support network of friends and family to be by my side throughout this journey. Thank you so much for being here for me! So...I march onward toward another new day which I know will be just as great as today, but likely even better - at least in the physical healing department which is key right now so that I can quickly move on to the next step in the cancer ass kicking mission. Thanks, everyone, for your support and prayers. Please keep it coming - you're helping me so very much and I'm so grateful. Love, Julie PS - Cancer, I have more friends than you do - so there!

Cocktail hour in 6345

FINALLY! Cocktails! OK....maybe not the kind of carefree cocktails I'd LIKE to be having - you know, the kind you sip out of a fancy shaped glass while lounging on some sandy beach in a tropical locale - but this cocktail mix I just took is about as good as it gets from where I sit at this moment. Mine is a cocktail of muscle relaxers and percocet. It is believed that a good amount of the pain I'm having is from muscle spasms since my chest muscles were relocated during the surgery, but also because of nurse brutis' nonsense the other night - a painful combination of ouch ouch ouch that got old quickly. Thankfully, nurse brutis was alone in her mission to kill my spirit and make me feel like crap. All the others since her have been running around trying to make it better. Earlier this afternoon my plastic surgeon, Dr.Crisera, who is in charge of my care (since the reconstruction is a lengthy multi-step process that just began) came in and apologized profusely for what he heard had been going on this weekend with my pain. He asked for nurse Brutis' name so that he can follow up on that craziness (karma is a bitch, ain't it!?) :). By the way, Dr.Crisera is amazing (and adorable) so if you ever need reconstructive surgery in the L.A. area, he's your man. The cocktail is helping. We need to make sure I'm stabilized on the right dose of this cocktail before they send me home so they can be sure I'll be comfortable the next couple weeks before they start pumping up the new booby expanders and of course we need me to be comfortable in order to heal rapidly which is needed before I start chemo. So....I'm spending another night here. That's totally fine with me. Even though I'm woken every 4 hours for medication and vitals I'm getting more sleep here than I have in an entire year at home (no offense little Cooper pooper) and I really need the rest. Thankfully, Bob and my mom are doing a great job crib training my little guy at home so I have faith that night time will get better and better at home - meantime, I'm taking advantage of the screw up here and getting another night of rest with round the clock care. My blackberry kicked the bucket this morning and I spent all day trying to revive it - it's a good thing I'm a patient and not a doctor because poor mr.blackberry coded and expired in spite of my efforts. So now I have no cell phone access unless Bob is here (so, just during the day) - just email access via laptop. Then it took several hours of convincing the IT powers that be at work that it truly had seen its last day and needed to be replaced. A new one should be arriving at my house tomorrow. If you need to reach me while I'm still here - email me and I'll send you the # you can call me at here in my room. Cancer -- just because you're not hormone-receptive doesn't mean you have a free ticket to wreak havoc on my body - your boarding pass has been confiscated so beat it, jerk! Love, Julie PS - A few people have asked me about the sign above my head in my hospital room which reminds staff not to perform any procedures such as BP checks on my left arm. The reason for this is that now that I have 17 fewer lymph nodes on that side, I'm at risk for developing lymphedema which can be brought on by certain things and thus several precautions now must be taken, including not allowing injections, blood draws, or BP checks on my left side, among other steps that I'll be learning more about in my post-op education and therapy process.