Thanks to Jerry Gunderson for this 1.5 minute Kleenex experience!
There is an organization here on Bainbridge Island called Arms Around Bainbridge. Arms Around Bainbridge began in 2007 with seven friends, a thirty mile swim around Bainbridge Island, and one vision: to provide financial and emotional support to Olivia Carey as she battled ovarian cancer (Olivia was my friend and colleague.) It immediately became apparent that Olivia’s challenges were not unique. Since 2007, AAB has helped and supported other residents in financial crisis due to life-threatening illness. Recently, cyclists, runners & rowers have joined to assist AAB in raising funds for current & future recipients.
On May 19, there will be a Spin-A-Thon fundraiser at Island Fitness. A group of friends/students/clients has put together a Team Loretta. Please consider giving to this worthwhile organization. While I am not a AAB recipient, your donation will help serve more people who need help during the most difficult time of their lives.
I was going to write a post on Monday but when the events in Boston occurred it didn’t feel right or appropriate to go on about my mundane week. My thoughts and prayers go out to all those injured and their families and to those who witnessed such horror.
As earlier stated, my week was fairly mundane. I did not feel great on Friday – Sunday but not horrible either. I think the combination of Nuelasta and a lower chemo dose worked. I have not had to visit Paradise. I feel stronger each day this week and will be ready for the next onslaught on May 22.
My sister Christine left this morning. She stayed for three weeks. She was originally scheduled to stay for two weeks but since my chemo was delayed a week, she stayed longer. It was great having her here. It means so much to me that all my siblings will come and visit. I am very lucky to have such great family. My friends (and family) have brought meals, sent cards and flowers, bought me great gifts, prayed, knitted hats, texted, emailed, walked my dog, visited, called and performed many other acts of kindness not mentioned but greatly appreciated. You all are the helpers in my life.
I will end this post with a quote from Mr Rogers. Even if you have read it, it is always good to read it again. I am very grateful to all those in my life who are helping and caring for me. We should remember how many helpers there are in the world.
“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of ‘disaster,’ I remember my mother’s words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world. ” Fred Rogers
When it was decided that I would give myself the white cell booster 24 hours after chemo (I had the first dose immediately after the first cycle of chemo) to see if it would work better, I thought it was going to be an auto inject. The preloaded type that you push a button and a small spring injects the needle and medicine. But, no…this was a regular syringe preloaded with the medicine. No auto inject here.
My oncology nurse gave me an injection lesson. You practice on a pretend piece of flesh. She showed me how to do it with a practice syringe. Then I practiced. Lo and behold I bent the needle! I was reassured that this would not happen when I gave myself the real injection.
For the next 24 hours I went over and over the self injection steps in my mind. I imagined grabbing stomach fat, stabbing the needle, pulling back the plunger a bit and then slowly injecting the Neulasta. When the time came for the injection, all went well. I did not bend the needle! As a matter of fact, I barely felt the injection
I don’t know if the Neulasta is boosting my white cells. I hope it is. I try to imagine my bone marrow going to town producing those lymphocytes. I do know that I won’t have any issues injecting the next two rounds of Neulasta. After all the worry, it turned out to be a non event.
Monday chemo on Tuesday, cause that’s how I roll! Actually, I couldn’t have chemo on Monday this week because there was no room at the Inn. I will go back to Monday’s in two weeks. All the low blood counts are way up so that is a positive. My sister Christine came with me and we walked from the ferry to SCCA (about 2.3 miles) another positive. My friend Jeanne picked us up and drove us home, yet another positive.
I am home. My friend Sandi brought over dinner, David and Rachel came by to say hello. Positive, positive, positive. Right now I am laying on the couch, cause that’s how I roll.
I get a lot of feedback about how much people appreciate the blog. They look forward to the next post. The blog makes them feel connected to me. Well, I want to thank everyone for taking the time to read all the posts. To those that feel comfortable commenting, your thoughts are appreciated more than I can say. To those that don’t comment, I know you are out there sending me good karma, prayers, etc. I want you to know how much all your thoughts and words mean to me.
There are days that I don’t post because I feel like I would bore you to tears with the details of my ordinary life. I have tried to keep my thoughts positive because that is really how I feel most of the time. Just to let you know, I do have moments of deep emotional anguish. Writing the blog helps me get through some of these moments. I am more comfortable writing them out then talking about them over and over and over…. I am a “feel it and deal with it” kind of person.
I know there are a lot of cancer support groups out there. Right now I don’t feel like I need them. I am so fortunate to have a husband to pull me off the ceiling when I get myself in a tizzy; to have amazing siblings who have started taking turns to come and help me; to have the best friends that feed my body and soul and send me the most amazing gifts.
So, thank you for indulging me and being my support group.
I know I just wrote a post about hair but it is kinda on my mind (not for long.) About two days ago I was fixing the side burn part of my hair and it came out in my hand. Well I thought, I won’t need to trim that for a while. I called for my sister, Christine, who is staying for a few weeks. I showed her the chunk of hair. There wasn’t much to say. It is very weird to pull wads of hair out of your head. It is amazing how much hair we really have.
Today was a windy day. I was wearing a hat. On the walk back from PT (this is the PT who works on my lymphatic system and surgery site as opposed to the PT that works on my pinched nerve. I am a project.) I decided to pull a little chunk of hair out near the nape of my neck and let it go with the breeze. I showed Christine where I pulled out the hair. She said “Oh you might not want to do that as there is a “v” shaped space in the back of your hair.” I said “Well I can fix that.” So I pulled another chunk out on the other side to even things out.
I felt like standing there with my hat off and pulling all my hair out so it could go with the wind. But then I probably would have ended up in the police blotter. (For my non Bainbridge Island readers, the Bainbridge Review police blotter has some off the wall items that only happen in small towns.) I can see the headline now “Island Trainer Loses Hair in Massive Wind Storm. Fined For Littering.” I kept my hat on and walked home.
One of the side effects of chemo is hair loss. All hair. Not just the hair on the top of your head but eyebrows, eyelashes, underarm hair, leg hair and any other place that hair grows, including inside your nose. Soon I will be smooth as silk. Unfortunately my head will be cold. So I have purchased and received as gifts, some hats. I have modeled them in the pictures below. I bought the straw one, my sister Christine bought me the red/orange hat and my friend Susan gave me the white floppy one.
I think I probably have four or five days left of my hair. I am not really looking forward to it falling out but it is going to happen and so I have come up with a list of positives:
1. No more worrying about what kind of shampoo to buy. Curly hair, straight hair,thickening,,,,,,
2. No more hair products. Is it a spiker gel day or a soft curl day?
3. No more bad hair days. It will always be the same length.
4. No more shaving. Smooth legs and pits.
5. No more mascara decisions. Waterproof, soft black, black black…..
6. No more eyebrow plucking. My friend Roberta bought me an eyebrow kit to recreate mine when they disappear. While I am officially a “petite arch,” I could create all kinds of eyebrows. Freida Kahlo, Albert Einstein, Joan Crawford…
7. No more bed head. My family won’t compare me to Andrew Jackson on the 20 dollar bill anymore.
I will shave my head at some point. I don’t know when that will be but will know when it should happen. Scott will probably be my barber. Unless I am very brave and do it myself.
Due to the recent, unforeseen events, my next round of chemo has been delayed one week. While my stay in Paradise was great, it would be better not to have to go back for another stay. The Powers That Be (really just the fabulous doctors and pharmacists) think the white cells and platelets will react the same way to the next three rounds of chemo. In order to give all those cells a chance to redeem themselves, I am getting an additional week until the next chemo.
I was suppose to start the second cycle of AC on Monday, April 1. I will now have that on Tuesday, April 9. The cycles will then go back to every two weeks (and Mondays) until the weekly T begins. The dose is going to be adjusted so that maybe the next time I won’t loose all my white cells. I am kinda of partial to them. I like my platelets and would like them to hang around, too.
I was given a white cell booster right after chemo. It didn’t work as well as expected so we are going to change that protocol, I will give myself the booster 24 hours after chemo. I could post a picture so you can all share in the fun!
I will not post a picture of my port area as it is pretty ugly with some new bruising and not a lot of platelets to stop the madness. I did send a picture to two of my sisters. My sister Diana’s reaction was “I probably could’ve gone my whole life without seeing that photo.” So you can all thank Diana for taking one for the team. Well…. and Claire who saw the photo and Christine who got to witness it in real life.
Happy Easter/Happy Passover everyone!
Yes it is true. They are finally returning. Those white cells -neutrophils-(read about ’em here) and platelets (read about ’em here) are coming back. I was admitted to the hospital because my neutrophils were 10 (normal range is 1500-8000) and I had a fever. The fever indicated that I had an infection. I also have low platelets. Mine were 35,000 (normal range is 150,000-450,000) when I was admitted. I was started on IV antibiotics every 8 hours to fight the infection.
I am happy to say that my neutrophils are now 220 and my platelets are 49,000. I have been fever free for more than 24 hours. This means that I may get to go home soon. Maybe late tomorrow afternoon…….
I just want everyone to know that I don’t feel bad and as you can see from photos, I still have hair. I am not bored because I read and walk the halls. I even get to write how much I pee on the white board. Scott goes home every night because sleeping in this chair is not an option.