Headed East

Last month, possibly because I was in the after treatment letdown phase (for those non-cancer survivors, it is very common to feel lost and set adrift once the weekly appointments end), I sought out a naturopath.  I am good with western medicine physically removing the cancer and estrogen producing ovaries from my body and prescribing medicine to help prevent new occurrences of cancer.  However, I am still having issues (hot flashes, intense pain in my right arm, a lack of mobility on my left side) and I want some relief.  So eastern medicine, here I come.  I found a naturopath who does acupuncture and massage therapy and since I am 100% paid up on my out of pocket maximum, all of these visits are free!  I am not sure how I am going to fit 60 massages into the last months of the year, but I am going to try really hard! 

The first time I visited the office, I had no idea what to expect.  Many of my friends go see naturopaths and swear by them, but I had never made the leap.  However, I was slightly taken aback when I walked in and saw a woman getting an IV of who knows what white sitting in a gravity free chair in the waiting room next to a giant gong.  Hhm.  I was trying to reserve judgement until I met the doctor.  The medical assistant took me back into the room with a massage table in the middle of it covered in flowered sheets and a side table full of oils, crystals, glass balls (cups – more on that later), packages of needles, things that look like tongs with colored ends, lighters, etc.  Not the sterile doctors office that I am used to.  There was also a tall lamp with a red shade which is used during the relaxing time when the overhead lights are out and a pink post-it on the mirror with the hand written saying “Oh, I feel pretty, oh so pretty!”  What have I gotten myself into?

The Dr. K came in and I really liked her manner.  She asked a ton of questions about why I was there, my health history and what I wanted out of the visits.  It was probably the most thorough initial visit that I have ever had.  Eventually she asked if I wanted acupuncture and I thought “why not?”   All in all, it was not that bad and I really liked the 20+ minutes where I got to lie on the warm table and relax while the needles did their magic.  Today was my 4th visit with the needles and she recommends I do 6 total and then we will re-evaluate.  She also started to do cupping/the cupping, I have no idea how you correctly term it, on my right arm and back. Google tells me that cupping is used for pain, inflammation, to increase blood flow, relaxation and well-being. It is bizarre.  She lit a cotton ball covered in alcohol on fire, placed it into the cup and let it draw the oxygen out, removed the cotton and then as fast as possible placed the mouth of the cup down on your body.  It feels like a giant hickey that does not move.  So I am lying there on the warm table with needles all over my hands, arms and ankles and 5 glass cups on my back and arm.  Then it is my favorite time, the relaxing.  Last week, I am pretty sure I fell asleep.  When the cups are removed, they make a suction sound and the feeling of your skin being released is weird, but in a good way.  I now have 5 round bruises from the cups; one of them is super dark and Dr. K says that it is doing a lot of good work in that area.  I have no idea if it will help me, but it’s worth a try! 

Dr. K is also going to work on some herbs for me to make into a tea which should help with the hot flashes.  We are waiting on that as I am currently on a break from my “stay the F away cancer” medicine and she does not want me to start the new meds and also new herbs at the same time.  I am  little frustrated as I had an appointment with my oncologist next week on the 15th to evaluate how I feel without the meds and how to move forward.  Apparently my oncologist and his wife are expecting a baby next week so they have to move my appointment until the Friday after Turkey Day.  Not what I really wanted to do that day, but it is what it is.  And having a baby is pretty important so I will give him a pass.  🙂

 

Why am I writing?

I want to share my journey, mainly what going through the breast cancer process twice was like for me, but also my life as a wife, a mother and as a person trying to figure out the rest of her life.  I want to laugh and cry and share with all of you.

All of the previous posts on this blog were on a private Facebook group.   I have decided to “go public” with my journey and hopefully inspire others.  There is hope and support out there.  Every person’s battle with cancer is different, but I think we are all scared and sad and even at times lonely, no matter how many people surround us.  It’s normal to cry.  All the time.  I feel lost still most days and wonder “why me?”  Everyone says that I am strong.  I feel like a mess who is barely holding it together.  But I get up every day and move forward.  Some days, I also take  steps back.  The goal is to just keep stepping.

The start of the rest of my life

On October 21, I attended The Breast Friend’s Patient, Survivor and Friends Luncheon and I may have found a new path for my life. One of the sessions was called “Taming The Tiger: Releasing Your Fears about Cancer” led by Dr. Shani Fox. Dr. Shani shared her own story of how she left a business career and went to med school in her 40’s for a major life change to honor her father and how he lived the last years of his life to the fullest. She led us in an exercise to remember a happy time and place in our own life and to then think of what we would be doing in life if we had no restrictions (i.e., health, money or time). It was something about the way she spoke to the room of survivors and the connection with us that made me look deep into myself. I cried (shocking, I know) and had to really think about it. This year has been so rough in many ways, not just my stupid cancer. My Dad had some scary health issues (he’s fine now), Nate got a promotion which is great, but includes more responsibility and travel and life at home is challenge to say the least with two of my step-kids living with us and a busy 6 year old. So I just sat there and cried.
Dr. Shani was trying to guide us to get to a happy place in our minds and what that looks like. For me, my health is paramount, but other than eating well, trying to get in some exercise and listening to my doctors, there is nothing else I can do to make sure my cancer does not come back so I don’t have a lot of control there. I have to let that fear go. The one thing I can control is MY journey, the day to day of me. I truly enjoy writing about what I have been going through and I like sharing. When I meet people and begin talking, my story tends to come out quickly and I joke that I am an “oversharer.” I like making a personal connection with people and I want to do it more. In that session, I decided that I want to become a writer and hopefully eventually a public speaker, sharing my struggles and helping others the way that I have been helped.

I called Nate on the way home that day and told him that I wanted to start writing my updates publicly and working towards writing a book. We worked on coming up with a domain name for my website where I would post updates and purchased www.ineverlikedpink.com . I did not want a link which screamed cancer, but was something kind of sassy and might one day be a good title for a book. Why not dream big, right? Plus, I have never been a girly girl who wore lots of pink or identified with the color. Sure, I had some pink ribbon items in support of breast cancer and my grandmother who passed way from it, but other than that, the color pink has never called out to me. Now that I am a two-time breast cancer survivor, pink and I, we’re buds. I don’t think that buying t-shirts or coffee mugs with pink ribbons will solve everything, but raising awareness and money for research is key.
Another thing which is key is getting the message out that there is so much support for those who are fighting this disease and their families and that there is life beyond cancer. I want to be one of those women who can help others while sharing my story. I want to blog about it, and write a book and speak at conferences like the one I attended. I want to give people hope and inspire them. I want to do book tours. I want to write about my life like Jen Lancaster and Glennon Doyle. If I get to make money and travel and inspire others, that’s a plus! So going forward, I will be posting on my site. I will still put a link here on Facebook for my updates, but I want to get my story out there. Feel free to share, comment and question anything that you think will help me along my journey. Right now, the website is bare bones, but it will grow. All of your support means the world to us and I am so thankful.

Moving Forward

October has been a better month. On the day of my last post, I was having a whiny, pity party. I felt crappy and sorry for myself and was wallowing. So much so that many people called and texted me to ask how I was doing. I appreciate that greatly. Some days are good and some days are not so good, but I so thankful for all of you who support us. The day after my post, I decided to do something to make my days better. I cannot control the aches and pains, but I can control what I do with my days.
I started to volunteer in J’s classroom twice a week to help those kids who need a little extra push leaning their numbers and letters and whatever else is needed. This morning I volunteered at the school, assisting with vision screening. I really enjoy getting to know the kids and helping. J was also in a play in his (top!) reading group this week so I could go watch that. I have been at the school so much lately that I feel like I should do a donation to the PSO to get my own parking space.
I also went into an organization called www.breastfriends.org. It is a fantastic support organization which helps those in all stages of breast cancer. I am going to start volunteering there next week doing data entry for their fundraising software, possibly some organizing (I love this part so much), stuffing envelopes and whatever else they need. These things I can do sitting down, which my body really appreciates. On the day I walked in, I also sat down with the patient care counselor who is a 7-year survivor. I really needed her counsel, support and hugs that day. We talked for almost an hour. I cried, we laughed and she reminded me that my most important job right now is to take care of myself. One thing that I keep seem to be forgetting is that I have had 2 major surgeries and 1 minor one this year and my body is still healing. It is going to take a while for my body to catch up to my brain. Not that my brain has not suffered, because it has, but I need to take care of all of me. Easier said than done, but I am trying.

I also called my oncologist a few weeks ago to discuss the severity of my side effects from the Letrozole. The joint and muscle pain makes it hard to feel decent and I was really suffering while just moving. Insomnia, hot flashes, stomach issues. Blah, blah, blah. I wanted to move on to the next medication as there are 3 that I can try and I had been on 2 so far. I heard back from him and he said to take a break from the meds for a month until my next appointment. My first reaction was “HELL NO! I have had cancer twice, the second time while taking Tamoxifen which is supposed to prevent this crap. How is it ok to NOT be on medication for even a month? What if I have super destructo cancer cells just waiting until the day that I stop my meds for it to explode again in my body? I’m predisposed. NOOOOOOOO!” But really, I said, “Ok, I will stop for a month.” I mean, he is the doctor, right? I have been off the meds for almost 2 weeks now and there is a noticeable difference. I walk faster, it is easier to kneel and get up, I am sleeping better, etc. The hot flashes are still there, but I have no ovaries, so that is just gonna happen. (I am so thankful for the cooler weather. It is 68 here today and I am less than thrilled. I want it in the low 50’s. Cooler weather = fewer hot flashes.) The one persistent pain that I am having is in my right arm. Why? You ask. I have no F’in idea. It started a few months ago, and I was attributing it to the medication as I used to have similar thigh pain while on the tamoxifen. But this pain is not going away. Then, I thought maybe it was because I throw the ball to Apollo with the chuck-it most mornings at the park. I switched to only throwing with my left arm. That was comical, let me tell you. In the beginning, I would throw the ball straight into the ground and Apollo would be looking at me like “hey, where is my ball, ball, balllllll?????” My left throwing has gotten better, thankfully, but the pain has not. Nate brought up the idea that it may be nerve pain. It gets a lot worse at night and just aches from my shoulder down through my elbow. I took a Flexeril last night to see if it would help, but no. UGH. Just one more thing to bring up with my doctor in a couple weeks.

I have also started to see a naturopath doctor. I figure that I am doing all that I can with western medicine, why not check out what eastern medicine has to offer. I went in last week and met the doctor for an initial visit and had my first acupuncture. Needles, you say? Why yes, needles. I chose to have 25 needles put into my body voluntarily. Many in my support group said that it can help with the hot flashes as well as the joint and muscle pain. That is how much pain I have been in that I am willing to try needles. When most of the needles went in, I just felt pressure. For about 5 or 6 of them, there was a very definite “OUCH” involved. My hands and feet were sweating just from the idea of it all. Then with all the needles in, I just laid there for 20 minutes trying not to move because the needles felt so weird. I really had no idea what to expect and overall it was not bad. I go back tomorrow for my next session; she recommended once a week for 6 weeks and then a re-evaluation. The best part about the naturopath is that there is also massage therapy there. Woohoo! I have had 2 so far and the therapist did a lot of work on my left side with Swedish massage and it really loosened it up. Today was mostly cranial sacral “massage” providing pressure on certain areas to do something. I really don’t understand it, but she told me that she felt all kinds of things going on. Sure, it just felt good to me to lie quietly on a warm table for an hour. For free. Did I mention that we have shelled out so much money this year that I have hit my out of pocket maximum for the year? Free massages, free needles, free meds. Tomorrow I go back in for another massage and I have another one scheduled for Tuesday. The insurance will cover 60 visits for the year so I am going to see how many I can fit in over the next 2 months!

And 2 steps back

So, I started my new job at J’s school this week. And then I quit my job at J’s school this week. I cried a lot this week. While I only worked 2 hours a day, that’s right, 2 hours a day, I was on my feet, walking the entire time. At the end of my shift, my body was like F YOU! My legs hurt so bad and were swollen, if I knelt down to pick something up, I could barely get back up. My hands were so swollen that I could not cross my fingers. I was nauseous and sick to my stomach. I took an hour long epsom salt bath that night which kind of helped. This was just on day 1. I switched shoes for day 2 and the results were the same. I knew that I needed to quit, but I had to talk to the principal and I felt so bad, that I was letting the school down. Day 3 was J’s jog-a-thon (he did great, 7 laps!) and this is something that I would normally volunteer for, but I knew that I could not do that and also work the shift. So I watched the jog-a-thon and then rested in my car until I had to work. The principal came in and asked how I was liking it and I had to tell her that I could not do it any longer. After the 2 hours were up, I went to her office and explained what was going on. Mentally I enjoyed the job, getting to know the kids and helping out and having something to do every day. Physically, I just could not be on my feet walking without a great deal of pain. She hugged me and I just cried. I so badly wanted to do this, be a part of J’s school, having more of a purpose every day and even to make a little, tiny bit of money. God damn cancer. I have never in my life worked for 3 days and quit a job. 6 pain filled hours. As a part of the job, I was required to undergo a background check for $59 which would be taken out of my first paycheck. So I made about $84; after taxes I may owe the school district money. I am pissed. And sad. I feel useless. I want to be healed. I want to feel “normal” and not be in pain all of the time. Most days it is manageable. Some days, I just lie on the couch or go back to bed. On Friday, the day after my last day, I slept for 3 solid hours after J went to school. I was exhausted from the week.

Now I generally walk slowly, Nate often helps me off of the couch or out of his car. My arm hurts. I can’t get comfortable at night to sleep. I am so over this.
I have been on the 2nd medication for 5 weeks now. They ask for a few month trial before moving on. My next appointment with my oncologist is Nov 15. Unless something drastically changes, I am going to ask to switch to the 3rd medication I can take (Aromasin) and hope that the side effects are better. These medications are optional, but with my history, I don’t feel that it is an option to not try to prevent future cancer. But damn, I hate this so much.
This week, at least one day, I have promised myself that I will make it to the gym and try the water aerobics class. I am also singing up for a class at my oncologists on fatigue and insomnia. There is also a weekend retreat at the coast for survivors in November which I am going to try to sign up for. It really helps to be around others who have experienced this and can help with information and answer questions. Plus it is a weekend away from day to day stuff. I am also going to see if I can volunteer in J’s class and also at a breast cancer support organization. I need to do something and be around people. Don’t get me wrong, I am a huge fan of being on the couch and reading or catching up on TV, but I need something more. It is so hard to just be and heal.

Taking a step forward

It’s been a while since I updated as I have not had too much to report. No one really wants to hear about my continuous aches and pains. i did switch medications almost 4 weeks ago, moving from one aromatase inhibitor to another (anastrozole to letrozole) in hopes that the side effects would improve. Eh, not so much. Yet. I still am hopeful, as it can take a while for one medication to get out of your system. So I am currently still experiencing joint/muscle pain and stiffness, insomnia and random stomach issues. I had thought that the insomnia was getting better and mentioned that to Nate and then promptly tossed and turned for the next 2 nights.

Today was the Race for the Cure in Portland. I know many people who participated, from friends to members of my Young Survivor’s Group, but not me. I just do not have the energy, nor stamina to be on my feet for that long. I said this morning that I felt like a ‘bad cancer survivor.” Nate’s response was “No, you are doing a great job at not dying.” That made me laugh and he’s right. As much as I want my body to do the things it used to more easily or to have stronger muscles in my arms or to just not have random pain in my bones, I am alive. Last weekend we went to Redmond, WA for a charity 5K for Nate’s company, Denali AI. Nate, Lily and her friend Emily did the 5K. I (kinda) did the 1K with Jackson and slept for almost 12 hours that night and my body ached the entire next day. I keep talking about going and trying out the hydro conditioning class at the gym, but have not made it yet. It is hard to remember that I am only 7 months out from a very major surgery and just 2 months from my last surgery. I want to feel better NOW! Patience is not my best quality. Hell, being in menopause, I am not sure I currently have any best qualities. My temper is short, the hot flashes are frequent and I just am blah. The BEST news for today is that rain is here, and I am in jeans, a long sleeve shirt and socks. Bring on the fall and cooler temps!!
I was finally able to schedule my tattooing of the 3-D nipples and whatever else I do to cover up the scars. I am bummed because the artist will not even see me until January for my consult and then my sessions will be in February, April and June. Apparently, I have to be 6 months healed before any tattooing can happen and 2 months between sessions. I was really hoping to be done by the end of this year, but I guess it is what it is. Not like my new fake boobs are going anywhere. And the artist I am using, who is one of the best in the country for this is, is not covered by my insurance plan. I can submit it, but it will be toward my out of network deductible which I will never meet. At least the 3-D part is about $450, so not super expensive, but it sure would have been nice to have that covered.

BUT, I finally made the plunge back into the working world and got a job so my super big paycheck will cover all of these expenses and more! Just kidding. I actually got 1/4 of a job. I am going to be working school days from 10:45am – 12:45 pm at J’s school as an Instructional Assistant (aka overseeing the kids in the cafeteria during the lunch periods) for about $14 per hour. I’m going to be RICH! hahahaha. Apparently being out of the work force for over 6 years has given me a 6 figure pay cut. I had been talking about getting a part time job last year, but then my diagnosis blew that out of the water. I was at the school earlier this week volunteering and was talking to the volunteer coordinator and then the principal about the position. The principal, who I adore, said that she would hire me on the spot. I discussed it with Nate and emailed my interest the next day. I filled out my paperwork this morning for the Tigard-Tualatin School District and am getting fingerprinted tomorrow. I am hoping that I will move on to office jobs in the school system and eventually retire from TTSD. I have no desire to go back and have a career as an executive assistant and this way I can work while J is in school and be free when he is out. A really important thing about this position is that it is only 2 hours a day, leaving me time before and after so I can rest, go to my doctor’s appointments and run errands.
I think that is all of my updates. Hopefully by next time, I will be having fewer side effects, be having less pain and one step closer to moving on. Thank you all for your continued support and love.

Tomorrows

I had my 3 week post permanent implant exchange appointment today with my plastic surgeon. She said that I am healing great and everything looks good. I am still swollen so the shape will change more and soften up a bit over time. While my new, much softer implants are a HUGE improvement, It is still weird. I have breasts, but no nipples and scars that show that something major has gone on. I am just not connected to them yet, and I am not sure if I ever will be, but it is what it is at this point and hopefully by 2018, this process will be over or close to it. I can get my nipples tattooed on in 3-4 months, depending on how I am healing. I go back in one month to evaluate that.
I am still suffering from a lot of joint and muscle pain from the daily medication. If I sit for a while, I often cannot get up and need help. Kneeling down to do laundry even for a short period of time is also a challenge and my hips and knees ache when I get up. Tonight, J and I were out playing frisbee at a cub scout event and he sad that I should jump to catch it if it goes over my head. I sure wish this body could jump. I have an appointment with my oncologist next week and will discuss the meds and side effects with him. I know there are other medications that I can take, so a change may be in order.

I went back to the gym yesterday for the first time this year to actually move my body instead of sitting by the pool. I walked for about 35 minutes on the treadmill at a really slow pace and then I got super dizzy and had to stop. 1.25 miles. WooHoo! Better than nothing. My calves were sore this morning. I am SO out of shape, but also have no energy to get into shape yet. I went back today and rode the recumbent bike for 45 minutes for 6 miles. My knees are aching tonight like I ran a marathon. This sucks, but I am going to keep at it until I can build up some endurance and then start to get back on the elliptical and do some weight training. My oncologist wants me doing weights that help work on bone strength because the meds are hard on the bones. Good times all around.
Also, i was curious and just checked my insurance totals for the year. For the 3 surgeries, doctors, etc., my insurance was billed $281,373 and paid out $90,781 and we have paid $5,000 out of pocket. What the hell? Thank god we have good insurance is all I that I can say.
This year has really sucked, but I know it will get better. It is often hard to remember that when my knees ache and my body hurts and my new boobs are so foreign to me, but I am here and that is all that truly matters. I am living every day, the good ones and the bad ones with my supportive husband, kids, family and friends. I am lucky enough to feel the joint pain and pay my out of pocket costs and yell at all of the kids in my house. Because I am here to experience all of the good things too. A friend recently reminded me that we all need to live and love harder because you never now what tomorrow will bring or even if you will have a tomorrow. F You cancer. I am getting my tomorrows!

Moving Forward, Slowly

The last few days have started to run together. I have gone from the bed to the couch and back to bed, numerous times a day. I have watched movies, listened to podcasts (I am currently fascinated with “Lore”) and done a whole lot of nothing. Today, I got up at 10:30 am, had coffee and then thought I had some energy so did some little things around the house and then took a nap at 1 pm. I am pretty bruised up, but I am healing. Still in a good amount of pain where my Dr. did the fat grafting (note to anyone – liposuction recovery hurts more than implant exchange!) I know it takes time for the pain to go away, but I am over it. Yes, I like not having to carry laundry baskets or take out the trash, but I hate that my arms ache when I blow dry my hair. And I still have the muscle and joint pain from my daily medication to deal with. It is so random, my right thigh will hurt or my left arm and my knee joints always ache. If I kneel down, I have a hard time getting back up.
Jackson comes home tonight from California, we really missed him, but it was good for him to have a vacation away and also time for me to rest. He starts golf camp tomorrow morning which will keep him busy during the mornings this week. I have another check-in with my Dr. on Wednesday, then another in 2 weeks. The next step in the process will be the nipple and cosmetic tattooing, but that is a few months out until I am really healed. And yes, my new implants are so much softer, I no longer feel that I have grapefruits on my chest. It is a huge difference. They still look weird, currently with the red incision lines and bruising, but it will get better.
Thank you so much to Stephanie Hartman, Lindsay Palmer and Cherina Burch for dinners this past week, and Juliet Hugeback, Suzan Pickett and Danielle Weathers to come this week. It makes our life so much easier when we can focus on my healing and not worrying about what’s for dinner.

Just so over it

Just had the post surgery visit with my Dr., well, actually the PA. She removed my wrap around bandages and said everything looks fantastic. They don’t look fantastic to me, but I know it will get better once the bruising goes away and the incisions heal. I go back in next week for a check, then again in August. Now it is back home to the couch for rest and sleep.
F’ You cancer. I am done with you.