Some of you have asked how Anna is doing so I thought I should write another post to keep you in the loop 🙂 Her lung functions continue to decline. From September to February she dropped 30%. If she continues at that pace, she will need another lung transplant before the year ends. Yesterday she was given Campath, a chemo drug that will reduce her immune system considerably. The hope is to stop the body from attacking her lungs. She will go back to Duke in early April to check her lung function and find out if the Campath helped. The future looks like a lot of “wait and see” (which is the reality for everyone!).
We are living in the moment not freaking out about all the “could be’s”. I continue to grow in this mind set, reminding myself that worrying doesn’t do anything to change reality. This approach does not mean sticking my head in the sand either. It’s an acceptance of reality, researching options and holding loosely to the outcome. I just keep getting opportunities to practice this with big ticket circumstances 🙂
Thank you to all who are holding Anna in your prayers and thoughts. She needs all the support she can get!
I am in Cambodia volunteering as a counselor at a retreat for women. The majority of the attendees are from Cambodia. There’s a smattering of women from Canada, Australia and the US as well. As I get to know the women and their stories, I am reminded that sadness knows no boundaries in terms of location and privilege. I want to honor the differences between cultures but I realize more and more the common thread that binds us: want. The want for something different. When the want goes unsatisfied, sadness and depression set in.
I am not criticizing the want. Simply noticing it. Giving a voice to it so to speak. The want for a better life or health isn’t wrong or bad; when it goes unmet, we hurt. And that makes sense. It’s good to acknowledge the sadness that comes with an unmet want. The acknowledgement is actually part of the healing. Once acknowledged, we can move toward acceptance of reality. We might not be able to change our situation but we can breathe. We can reach out to others who will accept us in our sadness and just sit with us. Often when we have been heard, we will figure out what our next step needs to be.
I have not met a single person who doesn’t feel sadness and depression at times. I have not met a person who doesn’t want for something. Regardless of geographical location, I believe, if we are honest, we are more alike than different.
I just lowered the price of the workbook from $19.99 to $9.99. It will be available at this price in 3-5 days on Amazon. I will keep it at this price until January 29, 2018. I also created a Kindle version. The Workbook isn’t ideal for Kindle, but it does make it easier to take the Workbook with you when you are on the go. If you buy (or bought) the print Workbook, you can purchase the Kindle version for $2.99. It’s called “Matchbook Price”.
The Journey Forward for Life website will be up and running by the end of February. I plan to offer a variety of workshops to compliment the Workbook and help you on your Journey Forward 😉
Anna has returned home from Duke Hospital! She is laying low and doing her best to avoid all the nasty germs since her immune system is not strong. She is getting back to just living a normal life. She will return to her new apartment in Phoenix next week. She is in a friend’s wedding next weekend and then she will start her internship at Southwest Behavioral Health.
I asked her how she is doing with her diagnosis of chronic rejection. She said she is choosing not to think about it. There is nothing she can do to change it. Moping around about it sucks life out of her and makes the present very gloomy. She is living in the moment of what is rather than what could be. She spent some time crying about it and then wiped her tears and said, “OK.”
I’m sure those tears will crop back up now and then. She’ll feel them and then continue to move forward. That’s the healthiest way to deal with the harsh realities of life. She sets a fabulous model for all of us as we face our own challenges, disappointments, and pain. Feel them if they are real, let the tears fall, and then wipe our eyes and move on. Live in the now, not the ‘what could be’.
2018 is starting out well! Anna has tolerated the rATG very well. The worst side effect so far has been a headache. That’s it! Yay!!! Thank you all for your continued support! It will take time before we know if the chronic rejection stops stealing her lung capacity. I’m assuming she will be followed fairly closely to keep an eye on it. I’ll keep you posted. For now, I think we can all breathe a sigh of relief. She still has a few days of being in the hospital while continuing the rATG treatment. I have returned home due to a work obligation. She is in good hands though! Besides our wonderful friends and family in North Carolina, her boyfriend, Michael is keeping a close eye on her 🙂
We have some answers about Anna. She has both acute and chronic rejection. Acute rejection is usually treatable. Anna has had this before. A few days of intense IV steroids have stopped it every time. Chronic rejection sometimes stops but the damage is irreversible. It causes scar tissue in the lungs. Lungs and scar-tissue don’t go very well together because scar tissue doesn’t expand like healthy lung tissue. As a result of the scarring, Anna’s lung functions have dropped to 62%.
Today, she started an IV treatment called rATG. It’s supposed to stop the acute rejection. I’m a bit confused about how or if this will help the chronic rejection. The rATG has some bad side-effects. Some people tolerate it just fine. Some end up with intense flu-like symptoms. Some have blood pressure issues and end up in the ICU. Some get PTLD. If you have followed Anna, you might recognize those four letters as the type of cancer she got. Side effects or complications are not one size fits all. Anna might be totally fine. At the moment she is in a Benadryl induced nap.
So here we are again staying in the here and now. I’m mad about the lost lung functions. I’m mad about the chronic rejection. I’m also sad about both. I stop there. I have to. I feel this heaviness in the center of my chest. It’s a ball of tears that just want to come pouring out. They will. I will let them, just not now. Right now Anna is staying upbeat and positive. She joked about how the last time she had Benadryl, she thought her hospital room was the portal to heaven and she called her brother and cousin to tell them they needed to get to her room or they would be left behind. So far, she’s not having that kind of fun!
I hear Dory sweetly reminding me, “Just keep swimming, just keep swimming…” So that’s what we will do. Breathe and make the best of now. It’s New Year’s Eve. We must celebrate!
On Thursday I was casually enjoying coffee with a friend. My plan for the day was to take care of a few errands and then head up to Buffalo, WY to enjoy my Birthday and New
Year’s with family there. I got a text from my step-daughter that my granddaughter was super sick and it might be good to put our trip off by a day or two. Plans change. Within an hour, I got another call. This one was from a nurse breaking the news that my daughter, Anna needed to get on a plane and head to Duke Hospital ASAP. Anna had gone to the Dr. for a regular checkup. While there, they discovered her lung function had decreased significantly. After a conversation with her team at Duke it was determined she needed to be treated there. By 5:30p we were on a flight to Raleigh/Durham. After we arrived, Anna was immediately admitted to the hospital. We don’t know exactly what’s going on. The likely culprit is rejection, but we won’t know for sure for a few days.
When I first heard about this I just listened. My next step was to call my husband and let him know. As I talked to him the gravity of it all started to sink in and I started crying. I cried for Anna because she, her dad, stepmom, brother and sister were supposed to leave on Sunday for their first-ever cruise. Anna was extremely excited about it and to hear she couldn’t go left her crying so hard she couldn’t tell me, that’s why the nurse called me. I also cried because I feared the worst: irreversible rejection. That’s where I started sinking. Fearing the unknown.
While sitting on the airplane I realized I was future-tripping. My eyes felt hot and tired and I started crying again. Then it hit me, I have no idea what’s going on with Anna’s lungs. This could all be an over-reaction. It could be minor rejection. It could be devastating rejection where the only solution is another transplant. These are all “could-be’s” none are a reality any human is aware of at this point. So I stopped myself. I said I will deal with reality when I know it. For now, stay with what I know is true and real.
That is what I am doing: staying in the here and now. It’s very freeing. Every time the sneaky future-buggers start yipping about how this might happen or that might happen, I quickly quiet them down with, “There aren’t any answers right now.” It simply requires awareness and intentional thought. Simple, not always easy, but always freeing!
(This is a rewrite of a previous post from November 2014.)
It’s the holiday season! Are you ready to be around people you find challenging? You know, the ones who say things and suddenly you no longer feel very good about yourself. Perhaps drama trails around them like Pigpen’s dirt cloud. Approaching these situations with understanding and compassion can help.
To begin, recognize you are never very far from hurting others. This awareness generally helps with the next valuable action to deal with dysfunction: seeking to understand. Understanding where someone might be coming from, what he might be thinking or feeling, helps us develop compassion for him. Understanding does not require that you agree.
Understanding, and its closely linked cousin, compassion can dramatically change any dysfunctional system, at the very least for you. As you put on understanding and compassion, you will notice you are not so negatively affected by the dysfunction. You more easily notice the dysfunctional barbs, recognize them as a product of the other person’s pain, process the feeling, and realize, “This is not about me.” Once you have metabolized your own reaction, you can then shift your focus onto at least being kind to this person.