Sunday, September 27, 2009

Knowing one's limits and asking for help

Preparing for this trip (to CT to visit family before the new chemo regimen begins) has been a good reminder to me that I need to be vocal about how I'm feeling and what types of help I need from others, including Bob. We had a dinner out one night before the trip and Cooper was a major handful and I was exhausted from just 5 minutes of following him around the restaurant when he refused to sit in the highchair. Bob didn't want to stay and eat (nor did I at that point) so we got the food packed up to go home. I think I blogged about this on Cooper's blog. Anyway, in the car on the way home, the discussion began about the process involved with getting onto an airplane, and I was panicking. I'm a seasoned traveler - by myself or with other adults - but I was terrified of this trip. If I can't chase Cooper around a restaurant for 5 minutes without feeling totally worn out, how would I survive having him in an airport as stand-by, non-revenue passengers (meaning, at the bottom of the stand-by list) if we don't get on the first or second flight options and end up stuck in the airport. Or, how will I manage to get me, Cooper, the car seat and our carry-on bag to the airplane and buckled in without help. I envisioned us getting to our row, placing Cooper in the airplane seat while I put his car seat in place and him jumping down and crawling around the plane while I fumbled and fretted. I envisioned his car seat wheel attachment thing helping us get TO the airplane but failing to fit down the aisle and leaving me having to find a way to carry him and his seat to the back row of the plane - which frankly would have been impossible in one trip. And this doesn't even include the visions I was having of what could happen at security. I explained my fears to Bob and he agreed that it would be too much for me to handle alone and we decided to use his employee discount to get confirmed seats (instead of stand-by) and to leave on the same day that Bob would leave for work so that he could ride the jump seat on the same plane as us on the first leg so he could help me, at least for part of the way there. I am so glad we did that because even with his help and even with Cooper being a great little traveler that day it was still hard and exhausting. The first flight had an airplane with a narrow aisle and sure enough that car seat and wheel attachment did NOT fit down the aisle so Bob had to carry it back to our seat. If I had been alone I think I would have turned around and just stayed home. Bob knew it would fit down the aisle of the second flight and our return flights (since the plane we would be on is the same one he flies and we compared the width of the carseat to that of his rollerboard suitcase) so he was confident I'd be able to manage things solo on that next leg of the trip. I wasn't so sure but I had no choice at that point since we were in Minneapolis. Unfortunately, there were no Delta or Northwest direct flights from LA to Hartford, otherwise we'd have chosen one. On a funny note, since Bob was on his way to work and was in uniform, he got a lot of funny, perplexed, looks from people as we walked through the airports and the plane - here's this pilot pushing the stroller through the airport and carrying Cooper down the aisle of the plane. One passenger even looked up and said "not THAT'S service!". Cooper was a good little traveler in spite of the fact that he barely slept the night before - we had to wake him at 3:30am to leave for the airport. He fussed the first half of the first flight but slept the remaining time. Then it was time for the second flight from Minneapolis to Hartford. I was sweating it - literally. But I managed to preboard with other disabled passengers and pull Cooper down to our seat where a wonderfully sweet flight attendant was standing with her arms out to take Cooper while I got his car seat into the airplane seat. We got all our stuff stashed away and I was so proud that it was uneventful. Then someone approached and informed us that Cooper was in his seat. Ut oh. Turns out I put us on the wrong side of the row. I put on my "oh my gosh I'm so sorry" face which, combined with my glaringly hairless head, must have elicited some sympathy because everyone that was supposed to sit on the side we had settle into was happily flexible and willing to sit on the opposite side. Phew! Everyone was boarded but for some reason we were still sitting at the gate when the pilot announced there was a mechanical issue with the plane and that they were trying to determine whether to fix it or switch planes. Ugh. As soon as the pilot stopped talking, Cooper started wiggling and whining. But, ta-da! There was that wonderfully sweet flight attendant again, standing in the aisle with arms out saying "let me take him for a walk". I love this woman. She took Cooper up and down the aisle, and to the cockpit for a visit. I KNOW God put this beautiful woman, Edna Johnson, on my flight that day. About an hour into sitting there waiting we got another announcement - we were switching planes - everybody, passengers and crew, had to deplane and go to another gate which was very far away. This is where another miracle happened. When we got off the plane we discovered that the ground crew thought they'd do us a favor and transfer the strollers to the other plane for us. ;/ Unfortunately, I needed ours to get our carry on bag to the other gate without hurting myself or dropping from exhaustion. Luckily, Bob was standing there when we got off the plane. I had called to tell him we were delayed and that they were trying to figure out what to do and he stuck around at the gate to wait to see what the outcome would be - just in case. God bless this man! He helped me drag Cooper, the car seat, and the carry on bag to the next gate which was really far away. As soon as we got there we preboarded again, received similar help from the same flight attendants, and got on our way to Hartford. And, Cooper slept nearly the entire flight. Like I said - little miracles all around me. People really do want to help out but most people don't know how until you tell them - including those closest to you. There are angels who anticipate and see what your needs are, and I've been so fortunate to have a number of those come to my rescue since my diagnosis. Then there are those angels who need to be asked, but who will jump at the opportunity to help. But, neither type of person can help if you're not putting your needs out there in some form. We have to ask. We have to be willing to admit that we can't do everything for ourselves the way we once could. That's hard to do when you've spent your life being the helper, the caregiver of others, the independent one that supports themselves no matter what the situation. I had learned to ask for help during my bed resting pregnancy but it wasn't easy and although I've been in that situation before, it's not easy this time either. I don't like admitting that I can't be on my feet for very long or that I can't lift more than a certain amount of weight because I had so many lymph nodes removed and am now at risk for lymphedema, or that I have some cognitive impairment due to the "chemo brain" phenomenon. But, I have to. I have to admit these things to myself and others and get help so that I don't overdo it and hurt myself or cause myself stress which is known to make treatment less effective. And, although I'm doing very well on the chemo, it is affecting me in ways that make life challenging and sometimes I hide that fact from those closest to me so they won't worry or be afraid but I think this is causing some of them to forget that I have limitations and that they can't expect the same things from me right now. I get frustrated thinking I shouldn't have to remind them but then I realize that it's my own fault that I have to because I'm always saying how great I'm doing and not talking so much about the difficulties or effects that interfere with every day life (like the exhaustion, peripheral neuropathy and short-term memory impairment, things like that). I don't want to be a complainer because I really do feel so blessed and lucky to be doing as well as I am compared to people I know who have had, or are now having, a really really difficult time in their treatments. But I have to be honest with myself and others in order for me to get the help that I need. So that is my challenge - to remain positive and focused on what's going well while also being open about what's hard for me and what I need more help with (more rest -while awake and more sleep time, help carrying stuff, etc.). After all, I'm only half-way through chemo which brings with it cumulative fatigue and affects - so I have a long road ahead finishing this part and going on to surgery and radiation too.


  1. Hang in there sweety, keep asking for what you need. That shows a lot of strength too.

  2. What an amazing story. God blesses us in so many ways. I'm glad to hear the traveling situation worked out so well for you.

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  4. It's great to hear you are recognizing that it's absolutely necessary and okay to ask for help--and LOTS of it. You need lots of support and help right now--anyone in your situation would--and you deserve as much help as you need. You're fighting a big fight--no one can win alone.

    Praying for you, Julie. I know you will beat this.

    Enjoy your family!

  5. whew -- I'm tired just hearing all about it! But, I'm thankful that things worked out so well for you and that your trip went smoothly. You're in my neck of the woods now (CT)and I hope you have a wonderful visit with your family. I continue to think of you and pray for you!

  6. Julie,

    I think we are sharing a brain (or lack thereof)right now:-) I totally relate just about every word you so beautifully articulate in this entry. Yuo are right and have made me rethink how I NEED to change my responses or reactions to the lack of help just falling at my feet. It IS SO HARD to ask for help..we(I) just want it to be there w/out prompting. But, as you mentioned, sometimes we just need to be up front and graciously ask for what we need. Others don't always see the sickness we feel. It's just so. dang. difficult. to do! Anyway, I'm here for you and walk along side you in this one for sure. Thank you for this.. you just never know who your journey will help(like some silly,screwed up lyme chick).