Learning to say thank you

I don’t really know anyone who is great at asking for help or accepting a compliment. This journey is filled with lessons in those areas. I get that it’s frustrating for my friends – you’ve told me you feel helpless, you just want to do something to help. Someone finally told us – you know, stop saying no when someone offers to bring dinner or do something for you… say yes, thank you, that would be so helpful. Sometimes do it even if you don’t need it. OK, so we’ve started saying yes, and it HAS been so helpful, particularly on crazy infusion days where I’m tired and Dara has to take Julian to a karate lesson. A survivor told me she put together a list of things she could ask others to do and even listed potential people by those tasks. I’m not sure I can go that far, but we are both learning to reach out for help, and to accept it when it’s offered. Thank you for continuing to be there for us. When I first received this massive outpouring of love and support, I really expected it to change. I knew that my close friends would still call and check in all the time, but I am so touched that even my broader network of friends (which includes people I haven’t seen in many years and even some people I don’t know very well) continues to stand firmly by my side, offering words of encouragement and support, and offering to help however they can. Thank you. So if we keep saying no to your offers, make us say yes. Remind me of this blog.

It’s the name calling I can’t quite accept yet. You’ve called me “brave”, “courageous”, “an inspiration”, and last week someone even used “hero”. I don’t feel like any of those descriptors. I’m living the only way I know to live and that doesn’t feel particularly courageous or brave. I think of people like Rosa Parks and Nelson Mandela – people who sacrificed so much to stand in their truth. I, on the other hand, am faced with a situation I didn’t choose and am dealing with it the only way I know how. So if I seem uncomfortable with what is clearly a beautiful compliment, you know why now. And remind me to just say thank you. Strong? Sure, I can gratefully accept that one. And if sharing my journey touches even one person, then that brings me great joy.  I started this for selfish reasons. I needed to journal in some way because I would wake at night with a million thoughts and I was convinced that putting pen to paper would help me to process through those thoughts (and it does). I also needed a way to update a lot of people on my progress. I always wanted to write and I am finding that while it started as a necessity, I am really enjoying it, and largely because of your feedback I’m now wondering if there is a book in this somewhere. Who knows…? I am open to all possibilities. I am clear this journey is filled with powerful messages and opportunities to learn more about myself. Perhaps adding “writer” to my list of skills is one of them. So thank YOU for inspiring me.

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Top 10 reasons bald is better

Laughter is the best medicine, or so Reader’s Digest taught us growing up. Given that, I give you today’s top 10 list…

Top 10 reasons bald is better…

10. You never have a bad hair day.

9. All that money you save on haircuts and hair care products can go to clothes and jewelry.

8. It cuts a good 20-30 minutes out of the morning routine.

7. No bed head.

6. You no longer have to worry about “convertible hair” on top down days.

5. You are so much cooler than those women with big hair on hot, humid days.

4. You can be around your best friend’s kids when they have lice.

3. What roots?

2. People notice your earrings.

1. You go from being “that one with the short hair” to “that bald lady” – significantly reduces the field.

The dragonfly

Quick update… With the compromised immune system, I am suffering from my first bug of some sort this week – fever, chills, aches, etc. But still feeling really good overall. I have my 7th treatment tomorrow which means only 2 more until surgery (when I will consider myself cancer free!!). CA125 is the tumor marker for ovarian cancer. I found out a couple of weeks ago that my first test result was 995 and after several treatments it went UP to 1386. It needs to come down – they thought it might be because of the blood clot. They tested again yesterday and it came down to 525! We are celebrating that!!

In the event this does turn into a book someday, this really should be the beginning of the book, as it’s truly the beginning of this journey. And the dragonfly has played a key role in it for me.

I was laid off earlier this year. I really needed to leave the group I was in long before that and so the universe moved me so that I could pursue my good elsewhere. I walked away with a pretty decent severance package, so while I started looking for a job, I didn’t feel panicked about it in any way and I remained confident this would lead to something bigger and better for me. I will save the outcome of that journey for another blog another day. On to the dragonfly…

One day while floating in the pool by myself, I was what can only be described as “harassed” by a few dragonflies. I would open my eyes and one would be taking a ride on my foot, or one would be hovering right in front of my face. I counted 5-6. This happened a few times before I finally decided there might be some message in this. Native Americans believe that animals are messengers and they appear to us for a reason. I needed to know about the dragonfly message, so I looked it up…

The dragonfly is generally associated with the symbolic meaning of transformation. Here are common meanings for this animal totem:

  • Change and transformation
  • Adaptability
  • Joy, lightness of being

 Well that seems fitting. This was going to be a time of change for me, I thought just because of the job. Over the next several weeks, the dragonflies really became a bit obnoxious. They appeared everywhere for me – on the highway while sitting in traffic, in parking lots, consistently in our backyard, just about any time I was outside anywhere, and two fairly unusual sightings. Just before I was admitted to the hospital, we spent a week at Amelia Island. We had an oceanfront condo on the 5th floor. Every single day, we had a full swarm of dragonflies outside our balcony. I’ve spent a lot of time at the beach in my life and I’ve never seen anything like this. And finally, when we got home from the hospital after diagnosis, Julian had also just come home from a trip to China. That Wednesday night he was showing us his pictures. In one he had taken from the Great Wall, yes, he had captured a dragonfly in the shot (without even knowing it).

Clearly, this is a significant time of change and transformation for us. I am open to all that means – in fact, I will gladly embrace it. Without fail every survivor tells me there are lessons and blessings in this that I can’t even imagine. So bring it on. I’m ready. And hey, dragonfly, MESSAGE RECEIVED. Back off, will ya?

 

It ain’t all sunshine and rainbows

Quick update: Not my best day or my best week for that matter, but still feel great far more than not, so I’ll take it. Just 2 more treatments before surgery!

However, I think it’s high time I do some bitching. Because I am clear that I’m very fortunate and blessed to have a world renowned oncologist, the most amazing support network, a protocol that is showing strong signs of working, and what I will call minimal side effects from the chemo. But it really isn’t all sunshine and rainbows. Here are my daily irritants.

These hose – seriously it is probably what bothers me the most every single day. They are super tight, and nothing keeps them from sliding down and gathering behind my knees and at my ankles, ever so slightly, but enough to be highly uncomfortable. Dara and I have to try to adjust them several times a day. And how am I supposed to get ANY kind of exercise with them? I would love to start just walking, but I can’t do that in these hose.

The shots – Lovenox shots twice per day in the lower belly. I am so bruised and have some sizeable knots. The shots are sometimes painful. We seem to finally have found a couple of places that seem to bruise less so it is getting better. It’s not a rainbow yet, but there’s some sunshine for sure.

The food dilemma – seriously this is so much better. I don’t know if much has really changed or if metal is an acquired taste like beer. I didn’t like it at first either, but now I do. So maybe I’ve just adjusted to the metallic flavor of most foods. My greatest sadness is that I had to break up with peanut butter. It is my favorite food group. And I still crave it and it still tastes good, but my digestive system hates it. I miss it. My buddy Sherri brought me some powdered peanut butter that I really need to try.

The Velcro head – I really thought I was going to lose all the stubble, but I haven’t and it is so stiff and hard that when I say it’s like Velcro, I’m not exaggerating for the laugh (because I’ve been known to do that). The Norelco electric razor helped trim it down a lot, but the only way to go completely smooth is a straight razor and I can’t have someone do that because of the blood thinners. Side bar, those of my generation – what do you see in your head when I say Norelco? If you don’t see cartoon Burl Ives riding one down a snowy bank, then I’m sorry your childhood wasn’t as fun as mine. Anyway, the Velcro head – when I take off a shirt at night, it sticks to my head. If I wear a scarf of any sort on my head, it is actually difficult to pull it off and it almost always creates little pulls in the fabric. It’s crazy. And quite frankly people (friends, because strangers doing this would just be creepy) just like to rub a bald head and they expect it to be smooth and nice. For me, you can walk away with a slight rash or some bloody scratches. Trust me, Julian makes fun of it every day, it’s just not pleasant.

My nose – my friend Kim warned me that losing the hair in my nose would be a huge irritant. I don’t know if that’s what is causing my problem because my nose doesn’t run constantly, it’s dry constantly. This will be a bit graphic so skip if you must but I’m hoping for some advice here. My nose is so dry and crusty with blood every single day – it burns and is really awful first thing in the morning but it’s an issue all day every day and can wake me at night. Chemo can dry out your skin so I think it might be more about that than the hair issue. I have saline spray for my nose and tried a humidifier which helps some but not much. I would love some other suggestions on this one because the bloody sculptures coming out of my nose are painful and grotesque. Between that and the bald head, I think I could easily be an extra on this season of The Walking Dead.

My energy – I can’t work 10 hours a day and that is supremely frustrating for me. Yep, getting over it. I get tired more quickly so I’m working as hard as I can when I can and learning to listen to my body and rest when I can. We even bought a little recliner for my office so I can rest when I need to once we move in.

So that’s really it… I’m tired, my nose hurts, my Velcro head is irritating, I miss peanut butter, I have some bruises from shots, and I don’t like these hose. So you see why it’s really still sunshiney and rainbows. The nausea and other gastrointestinal woes are really very manageable for me through prescription drugs and OTC (over-the-counter) meds like Imodium. I was a bit scared for a while thinking that the chemo must not be working since my side effects were mild (the new CA125 numbers helped alleviate that fear!). I’m blessed and grateful. I know your prayers and support for me are having a direct impact on my journey. Thank you! And I bless you right back my friends.

My new job

I interviewed for a lot of jobs, turned down a few, was passed over for a few, and never got really excited about any… until one day I received a voicemail from Eric. He said “I am RIDICULOUSLY excited about your resume. Give me a call.” Well who doesn’t want to hear that? I called him back. He made a great career for himself as a recruiter and was basically recruiting me to a franchise company to start my own recruiting firm. For the first 3 conversations, I was pretty meh about it overall. Then, with his help, I started thinking about several things…

How would I rate the recruiters with whom I had worked over the last few months? Not very high for the most part. They were mostly healthcare I.T. recruiters, but they were career recruiters and not as familiar with the industry as I thought they should be.

How was I positioning myself? I said over and over “I’d really like to take my vast operations experience, leading large services, support, and consulting organizations with large P&L responsibilities and combine that with my sales leadership experience to run a business end to end.” I was talking about running a business unit or a region end to end. Or was I?

What do I love about leading people and running businesses? I am a relationship person. I love mentoring and coaching people to help them figure out where they want to go and what they want to accomplish. Find your passion! Likewise, I always wanted to leverage my experience into more of a consulting role with smaller companies – help them navigate the industry and the resources needed for success.

We agreed to talk further with the company. And then I met Brad, the CEO. After talking through my passion with him, his response was “What do you think we do in recruiting? We guide people through change to the right kind of position and company, and we guide businesses through transformation and change.” Um hello dragonfly (see earlier blog). And, it’s really about building strong relationships. That I can do. We flew to Chicago to meet with the team and hear the full presentation. Most of the people on the senior leadership team have worked together for over 20 years – that says a lot. We fell in love with them, the business model, and the approach. And they insisted that this was a family decision and we both had to be sure. We knew when we left, but did a bit more research and some reference calls when we got home. We said OH YES later that week and the wheels started to turn. We were to fly to Chicago on 7/28 (sound familiar?) for 2 weeks of training. But instead we were in the hospital and I was diagnosed with cancer.

We canceled the flight and the training and did have a moment of OH HELL NO because the investment was done. The next 5 minutes we realized a couple of things. First, if I had taken any of the jobs along the way, I don’t know that they could have kept me during this – ALL of them were at least 50% travel OR required a move to another state (can you imagine??). Travel was a critical part of the success of the jobs. I can’t travel at all right now so I would have had a reduced salary and been on leave (if I could even do that this soon after starting the job). Second, if we tried to find a way to pull out now, who would hire me right now? I have cancer. I can’t put in a hard 40 hour work week at the moment and I have to be off every Wednesday afternoon for treatment. But guess what? You know who would hire me right now? Me. Because I know I can still contribute a lot and together we can make this business work. Panic canceled. This is all in perfect Divine Order (or the big D.O. as we call it). I’m super excited about the business and it’s great to have somewhere to put my focus and energy right now. I’m sure it’s part of the reason why no one thinks I look like a patient.

So, we are now up and running – Global Recruiters Network of Sandy Springs. My focus will be largely on Healthcare I.T. (sales, implementations, project management, consulting, customer support, leadership) and also (given my years in the I.T. world) in general I.T. The company knew I couldn’t travel and arranged for Bill, their senior trainer to work with me every day on the phone to conduct my personalized training. I graduated last week and am thrilled about that. I am so grateful to Brad, Glen, Bill, John, Joanna, Jeff, Jeannie (and the people I surely left out) for being creative and working with us. I continue to be so impressed with these people. They are completely invested in our success. It’s the best of both worlds – our own business but with an incredibly strong and dedicated support network in place TO ENSURE OUR SUCCESS. Oh, and Eric who first called me? He’s a mentor and a friend now. He and his family are part of the KCA team and he calls several times a week to check in on me personally.

I’m working with a few people and hope to secure some business with a few companies soon. And I’m loving it. Dara is helping more behind the scenes right now, but will be seeking candidates for me before long. Julian is getting involved as well and quite excited about it. We have an office near the house that should be ready within the month and we’ll hire at least one employee fairly soon to help out. So not only am I on the warpath Kickin’ Cancer’s Ass, but I’m also planning on Kickin’ Recruiting’s Ass at the same time. I have 2 feet after all.

General Update

Since it’s been a little over a week, I thought it was time for a general update on how things are going. The last couple of weeks have not been my favorite. I’ve had a fever on and off and a couple of different infections that required antibiotics. Some people are just more sensitive to antibiotics than others and I’m one of them. For me, take an already sensitive gastrointestinal system (reflux, etc.), add chemo, then throw on 2 strong antibiotics, and let’s just say it’s made for a good bit of unpleasantness. I’m also now neutropenic (low white blood cell count and more susceptible to infection and disease) so I have to have shots of Neuopogen every week to boost white cell production. I made a comment to the nurse that I was now neutrogena (for a laugh of course) and now they all call me Miss Neutrogena. Lately, I’ve had my fair share of days where I did nothing but stretch out in my recliner and feel sorry for myself. I figure I’m entitled to a few of those days. I don’t know how people stay positive if their entire chemo journey is like that. I’ve been so blessed to have mostly good days.

Now on to the good news and the rest of the update.

Had a great Dr. appt last week. My CA125 went from 1386 to 525 in one month. In the nurse’s words, that is a dramatic drop and a good indication of how well I will do overall. Yay! I know that should really be the best news. It is however, somewhat trumped by the news from my vascular nurse that I no longer have to wear the compression hose. Yes, hallelujah amen, goodbye. I have had them off for the last 5 days and it has made my life so much better.

I’m plugging back into work now that I’m starting to feel a little better and still so excited about this new adventure. And I’m so excited that my chorus has started back up – The Atlanta Women’s Chorus, part of Voices of Note which also houses The Atlanta Gay Men’s Chorus. What you see in the picture is a wonderful t-shirt that the women designed and many in both choruses are wearing to support me. I can’t tell you how much that has meant to me. The front says STAY CALM AND FIGHT ON. I’m so touched – this organization has meant so much to me and like many others, they have risen up to support me through this. I love all of you and thank you for lifting me up in your hearts and for your love and support!

Next steps… tomorrow is my LAST chemo treatment for this first round. It’s been 9 weeks – hard to believe. On Friday, Oct. 3, I will have a CT scan to see where we stand, and then we meet with the surgeon on Monday, Oct.6. I hope we will schedule surgery at that time. Two weeks after surgery, I will start on an 18-week cycle that is a little different. I will have a port added to my stomach and will have a treatment schedule as follows – Day 1 – Taxol, chest port, Day 2 – Cisplatin, stomach port, Day 8 – Taxol, stomach port and then I get 13 days off. The infusion nurses said days 3-5 will be rough, but won’t it be nice to have almost 2 weeks OFF??

As always, thank you for your love and support. I know the prayers and loving light sent my way are making the difference in my journey. Dara and I appreciate all you do for us. And we look forward to checking this off our to-do list and moving on to more fun things.

Insomnia

I’m fortunate in that I’ve never had trouble sleeping. I go to sleep easily and wake up early and with plans for the day to be made (which is a huge irritant to my wife and son who are clearly NOT morning people). However, that is all different at the moment. Whether it’s the chunks of information added to my brain and the increased frequency of things like doctor appointments, infusion times, etc., or it’s simply a by-product of the chemo pre-drugs which include a heavy dose of steroids, I am now finding myself awake at very odd hours for very long periods of time particularly on infusion (chemo) days. I have a new empathy now for those of you I know are insomniacs. Wow, how do you do it?

Let me try to describe my night. Went to bed at 11:30 – after all, the new season of TV is here and we had lots of recording and watching to do. Did a guided meditation, and slept so well. Until 12:30 when I had to get up and let out some of the 98 bags of fluids they put into me at my infusion appointment. Now I’m wide awake and this never used to be the case even if I had to get up. Like WIDE AWAKE. During this particular awake sequence that lasted until roughly 2am, I tried all the things I know to do to quiet my mind – relaxing my full body starting with the feet, focusing on my deep breathing, and even tried another meditation (which without earphones upstairs becomes an interesting manipulation of the phone to try to play it loud enough for me to hear but not so loud that it wakes up Dara). Note to self, get comfortable earphones for upstairs. But I was AWAKE. Only time seemed to create sleepiness again. Which lasted approximately 1 hour before I was AWAKE again. This time I checked Facebook on my phone for a while (LOOK, there are other people awake at this hour). And I finally decided to read my bookclub book. This meant opening my iPad and quickly swiping up to turn down the backlight so that it didn’t instantly become daylight in the room and wake up Dara. I started to read some and realized when the light is that dim, not only do I need readers, but I also need to make the font the size that is typically at the top of the eye exam chart, which allows for about 3 lines per screen. And it’s a funny book, so I had to stifle laughter and try really hard not to shake the bed. Oh, and the readers were dirty and cleaning them seemed to be a squeaky and loud process. All this while trying again not to be too loud in my insomnia. About 4:30am I decided I was tired of reading and rather than drifting off to sleep, I wrote this blog in my head. I probably went back to sleep around 5:15 and slept until about 6am. I should have just gotten up and showered, but instead I made a lot of plans for the next few days and remembered a lot of things I needed to check or do… I’m avoiding soy right now OMG do those protein shakes have soy in them? What am I going to wear to the annual season kick-off for Voices of Note tomorrow night? Should I go bald or wear a fancy scarf? And where are those scarves anyway? What shoes am I going to wear? Maybe I should review my part while I’m not sleeping this morning (a small group is singing). Tomorrow? What am I going to wear today? Do I have all my stuff for rehearsal tonight? I can’t wait to see Allie at lunch today and Nicole is coming to the big event tomorrow night. Yay. Is it close enough to 7 to just get up and get moving? YES, thank GOD I’m UP!

My favorite part is when Dara finally opens an eye and I start talking and she starts moaning. I really can’t fill her in on anything until around 10ish in the morning. I then greeted her and Julian downstairs with a loud cheery “WHAT UP A.T.L.? It’s hyper day after chemo day. How YOU doin? HAVE A GREAT DAY!” Yeah, they love me anyway.

Have a great day y’all.

SHAMELESS PLUG: If you’re local and interested, tomorrow night will be a wonderful event. I can’t wait! For more information, go to http://www.voicesofnote.org/events/encore-2014/.