Archive for March, 2015

A day of normalcy!

March 20, 2015

On Tuesday, I had a day of normalcy. Since my chemo last Wednesday, I have had a new ailment each day. It started with horrific nausea that no amount of anti nausea meds would help. I ended up sleeping the days away just to avoid being more nauseous which almost helped. Then, came the diarrhea, then vomiting, then more nausea. Unfortunately, I am taking so many things so who knows what is causing what. All I know is that food hasn’t been a priority, but staying hydrated is. the vomiting at night caused Jim to cancel his trip. Despite all the plans for rides, food delivery, and day visits, we did not have any night time coverage. Jim was not comfortable leaving us.

In between my fog, I still did physical therapy and managed to walk to the end of the block. What is still so frustrating is that this healing of the body is taking much longer than I thought. With the wound, the Cancer, and the colostomy, my body is doing the best it can do. I almost hear it telling me, “hey lady, you expect me to heal all these areas? Be patient, one thing at a time.”
Then, Tuesday came. It all had to do with what we call the Joanie project. Now, when I was in the hospital for two months, we had some really scary moments and some panic on my part. I hadn’t done all I wanted to do as far as “the plans”. Besides the general burial wishes, funeral wishes, there was the idea that I wanted to write letters to Alex for every major event and then every birthday. This idea also expanded to letters to Jim, my family, and more. When the recovery phase came, the reality of that task plus the energy and emotion it would take is something that I don’t have. So, a while back I thought I saw an ad with doing a video recording, but I couldn’t find this ad. Also, had friends look for it with no luck. Then, I thought about Megan who did Alex’s photo booth for his bar mitzvah and she normally does videos. She was so easy to work with and a great communicator. I sent her an email not really clear on my “joanie project”. She and I met and we both understood that this would be a fun video, upbeat, and would somehow capture me. She had suggested a make up artist, and at first I diasagreed. I’m so glad I listened to her. Raven from Vanity Belle Beauty turned me into a normal joanie from the grey Cancer joanie. I felt like me again. Jim said I looked beautiful and healthy and was speechless. The time passed quickly and we had a lot of fun. It was emotional at the end, but when I talk about tomorrow’s it usually is….I highly recommend doing a video project, but more for an anniversary gift or milestone birthday. It is fun to remember all the good times and the great memories. It is more fun to know that this part is done and my message of finding your sunshine, not sweating the small stuff is recorded in my voice with my healthy face. I cannot thank Megan enough for making the process so easy and fun and Raven for making me feel normal.
You can see for yourself the photos…
watertree video modelwatertree video 1watertree video 2watertree video 3watertree video 4

Sunshine is everywhere! look up, stop texting, emailing…now.

March 6, 2015

Ocean wide on left with wispy clouds over Catalina and snow capped mountains to my right…what could be more beautiful. A nice crisp California morning with bright blue sky and the hazy outline of purple mountains majesty fills my heart with joy.

Not so joyful is wearing the wrong bra, but my one exciting trip upstairs was so thrilling that I managed to find a shirt I could wear but forgot about the bra. Yesterday my pt brought me upstairs. Positive was that unlike at ucla I didn’t feel like I had run a marathon. This is due to my living in a hospital bed for 2 months. I jacked up my back. This means I can only use one leg to go up and one leg to go down. Hey, I’m just thrilled that I did it. Yes I did cry the first time and my pt said he was equally as happy to share this moment with me. Alex was very eager despite his late start day, jumped out Of bed to have the opportunity to be part of this milestone. So what is a little more discomfort wearing the wrong bra. Honestly this is way better than my exit from ucla wearing a hospital gown.

There is also the need to look and feel cute. Even though it took a huge effort and I had some difficulty putting eyebrows on straight and trying to look less Cancer pale, I felt good with the clothes that kind of fit. My gap order didn’t get here yet, so I was stuck with my “lounge wear”. Lucky my sis bought me a bunch of clothes that did work and looked like clothes instead of pajamas.

Regarding my new routine with living with a colostomy…don’t read on unless you have a desire to discuss what is now my singular focus: poop. Besides all the strangeness of how it all works, I have to say that there have been so many calamities like the bag exploding and getting rained on by poop. Lucky my sister was on FaceTime telling me not to panic. I can look back now and almost laugh. Especially when the nurse said, “I’ve never seen that happen!” Of course, leave it to me. Then, once I thought I was almost professional, noticed that there was a hole in the bag…so another mess. Lucky I was wearing disposable hospital clothes. Then, there was a nurse giving me the reality of the poop situation calling me anal and saying you can’t focus on a clean bag because too much cleaning causes infection and stop examining it. I agreed reluctantly only for him to tell me the usual of “models have it, people all over have colostomy bags”.., I don’t really care about people because I’m still in shock about not being able to eat the food that I love. Not sure how a dietician thinks that after I told her I like to chew and I was a vegetarian and how much I love salads that she suggested i should purée a salad. YIKES! No way. No more fresh fruit, raw veggies, or salads or bad things will happen. I decide to think of veggies and fruits I like cooked. Of course, I think of cobbler, pies, mashed potatoes…I’m alive, so I will focus on my latest passion of chicken legs and croissants. Not together.

Besides the bag, I have the entire wound incision to be handling daily. I believe my belly button is missing. I really cannot look at the holes in my abdomen. It seems unnatural. it is not like I’m going to my Club Med days or becoming a bikini model, but what the hell is going on with my belly. Gone is the giant lizard baby. Lucky as Jim and I had talked about before, it was good to have a 10lb cush of weight. I had gained 40lbs of edema which was followed by that loss and an additional loss of 20lbs, so I’m back at my high school weight but without any muscles. I can’t get over the flap of tricep blowing in the wind and hate to say I miss my big ole butt with the nice cushion. Sitting on a bench or a bad chair just doesn’t do it with a bony butt. I’m sure some of you have always had a bony butt, but this is a new sensation.

Lastly, the cancer which is hanging around the colon. It needs to go away. Despite the 6 hours of driving to UCLA, I did enjoy the sights and exiting the house. What I didn’t enjoy was the pain and discomfort along with fatigue that came after…it was the first time I had pain again since I’ve been home. My boys came to my rescue rubbing my feet, calming me down, and cheering me on until the meds kicked in. My blood work came back and my tumor marker is slightly up, and the rest except one liver number which we have to watch is fine. My doc said I needed to add the pill drug at half dose to start. He feels strongly about it based on all his explanation which he lost me after 5 minutes, but Jim understood. I started it tonight which of course the side effects are eye issues and skin issues besides the rest of the ones I have experienced. Next Weds is the duo of chemo drugs.

Tomorrow is another trip upstairs AND hoping to walk outside in the real sunshine. Lots of sunshine to come…please find yours. Remember your sunshine can be the simple things like holding your husband’s hand or hugging a friend. Try something new out of your comfort zone or better yet make that call,text that friend, send that email that you have been putting off. You will be glad you did. Say what you mean, tell the truth and be honest. Most importantly, be kind. Be kind to everyone you meet today especially those who really bug you. Kindness goes a long way. Look up, stop texting, emailing because it can all wait. There is sunshine moments happening all around you, but you have to take the moment to capture them. Today is now and now is what we have! If it all seems too much, one hour at a time. Hey, often I’m just at one minute at a time. Please stay in the moment. Now, today.