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.
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.
A home healthcare which is not a home HELLthcare! Would you believe a real nurse came over and reviewed each medication with me and spent 2 hours with me and a real PT who evaluated me with no surprise of weakness in legs followed by the lecture that just because you feel 1000% better in mind, you must allow your body to heal. You all know I have no time for that, but okay I listened. All this real home care and more! A call from a nighttime on call nurse who said if I need anything to call, but explained that she mostly does a lot of talking and not medicinal support as late nights are difficult for the newly home patients. Don’t I know it! Besides waking up automatically at 12,2,4 for my vital signs only to realize that I am home, I completely understand why people who return home from the hospital don’t sleep.
Being home even though stairs are my next challenge, having my dad here with me along with the best boys ever, and all of you an email, text away, is best medicine ever. I’m currently in chemos land with many visits from the team of home healthcare. I must learn how to eat with having a colostomy with a visit from a dietician this morning. I’m learning salads will not be my friend which saddens me, but I’ll eat anything to be here and enjoy good days.
Biggest issue is no clothes that fit, so lucky my baby sister who takes me shopping via FaceTime is a huge help along with other excellent shopper friends. It is hard to be a midget and flubby without muscle tone. It just isn’t a category in old navy.
Best sunshine of my day yesterday was standing and cutting an apple for Alex for a snack when he complained that when he cuts it, it just isn’t the way I do it. Best sunshine coming home was seeing the booklet made by Kelli Clifford who compiled the best of my blog plus photos into this booklet that I can bring to chemo or mail to people around the world. Best sunshine this morning, Alex having a bad hair day and asking me if I can help even though I’m not a hair stylist which I explained I styled many a Barbie hair. We won’t share with him that I cut all their hairs off eventually! Best sunshine moment yesterday was real Starbucks coffee and a croissant.
So, my days are filled with pills and home health visits and naps. My goal is to get upstairs AND exit my house just to walk maybe to Tiff’s?
Thanks for all your prayers and continued support. As always contact Tiff for any questions since I’m not answering my phone much or looking at much online….soon, but not yet.
My message of the day…be kind to others, stop and take a breath, live in the NOW, find your sunshine which can be the simplest of things, say thanks, and know there is always someone who may have challenges which you may not be able to see…just please don’t get caught up in the small stuff. No one is going to care if your house is spotless or if the piles on the counter are growing…it all gets done eventually. I’m looking out the window seeing a lot of sunshine and listening to French radio trying to remember the words which were part of years of Club Med days…great memories. Find your sunshine! I have found mine just being home!
The next bit of info is something you may not be able to read now or like me are in disbelief about how much time has passed and how I miss all of you and love you very much.
I have a million stories to tell about the care or lack of care or calamities or ambulance ride with 3 hunks to UCLA Santa Monica from Hoag. I have not the time nor the energy to tell them all now. Know that is my hope to share my journey as I always have.
On Jan 4, I went for a hike with alex for over 3 miles and ate a burger for dinner. That night I came down with horrendous pain in my abdomen. My Cancer was progressing as we were aware, but I was unsure of this pain. I think it was the 4th when I went to Hoag Irvine ED where my besties greeted me with open arms. Long story, I was there until the 9th where it was determined I would die without the surgery to unblock my bowel covered by Cancer. I would be getting a colostomy. I was transferred to UCLA Santa Monica not ideal but there were no beds. It was a life or death situation and my doc fought hard to fight for the last bed. It was between me and an organ donor. You know me…I thought what happens to that family.
I was at UCLA Santa Monica from the 9th to 2/1. I had a wound infection and was very serious. My body was full of edema. I asked my doc if my body was done even though my mind wasn’t. My doc was convinced it was a difficult road, but I could do it. My oncologist Gottfried Konecny was there for my first bowel movement, came to visit at 10:30 many evenings, held my hand, held a bucket when I threw up. He is one incredible doctor. I cannot explain how difficult it has been for my boys, my mom and sister who were there with me at UCLA for a week. I had great care at UCLA. A harpist, urban zen, teams of docs, but things are complex…then I was released to home healthcare from HELL. These people were idiots. They did not do my wound care and did not handle my pain meds. Too much too soon on my own. I went back to Hoag irvine after Monday last week went for blood transfusion. It was Tuesday night…I came with pain. I could not control it. It has been a mess here trying to find the balance.
I’m now at a very difficult place. I need to get the right care to stay alive for as long as possible. Each day is a gift. My continual message is to be your own advocate and find some sunshine in every day.
I was told I’m in a unknown place with very poor prognosis. I am looking for good days and planning as much as I can with my wishes for my family and for all of you.
Lastly, I ask you to contact Tiff only for any questions or any help you think you can provide my boys, my parents, my sister, her husband and her kids. Please pray for our family. Please know I am not giving up, but the body is tired. I want you all to be there for my family like you have been and I also know that it is not easy for you as it is life shattering for my family. I need for alex to have as many happy days and as much normalcy as possible….so if time works, give tiff a call if you have an idea for a fun outing for alex. Know that my rock star soul mate husband is broken needing “oxygen” on a daily basis as he watches me struggle to survive each day. Jim is my partner, the love of my life, the one who has been there for me every second of this crazy ride. I’m proud of Alex and who he has become. No one can fully understand the love I have for my boys and the motivation it provides me to make these difficult decisions. I’m one lucky gal with wonderful friends, but most importantly a wonderful loving adoring baby sister who will do anything I need, a devoted mom who stayed up for 3 week 24 hours a day until I saw in her eyes that she was wiped out. A dad who has sacrificed so much for me to become the woman I am today.
Please pray for my family. I ask that no matter what happens you will be there for my family every day forward in cloudy and sunny days.
I ask you again to find your sunshine always.
I think it is a cruel joke that these chemo drugs play on patients. Once the fog begins to clear and the high from the steroids wears off, you think you are on the path to see the wizard for the magic is about to happen. Then, all of a sudden the palms of your hands are bright red and you have a strange sensation in your feet. For me, I was so happy to be able to breathe that I just ignored it. I started my practice of walking down the hill from my house to the elementary school. This walk I took for granted all the years prior to having cancer. I can see Alex and I among my neighbors walking down the hill. Such great memories and who knew I would be going in slow motion down the hill. On my exit, I did see friend who honked and waved in excitement. They couldn’t believe their eyes and I couldn’t believe mine either as I creepy crawled down the hill. My goal was to make it down the hill and back up. It is 2.4 miles round trip. The up factor never was easy even when I did it every single day with Alex in elementary school. Of course, this included times when I had to walk way behind him. I was proud to be walking, breathing, and moving without the weight of 12lbs of malignant fluid burdening my body and mind. I almost skipped down the hill. I did ignore the shooting pains in my feet because I first explained it by the reason that I had not really moved for months and walking down and up hill was hard on the feet. Then, my detective husband noticed my movement was slowing down and I could not even keep up at a snails pace. Again, I ignored the obvious signs and symptoms of hand and foot syndrome. I finally did the google search on the chemo drug and listed in bold was the 70% hand and foot syndrome ONE WEEK or more after the dose of chemo. WHAT? So glad to be learning this NOW. Lucky for me, I made it through Greece, Croatia, Turkey, and Italy with this and had potions and lotions for this ailment. I started my day with putting numbing cream on the feet. Yes, this is NOT what it’s purpose is, but I have to continue my exercise plan before tomorrow’s chemo. With bounce in my step and the clouds disappearing to the glorious sunshine and perfect 70 degree weather, I floated down the hill not feeling my feet at all. It is a strange sensation especially since I had to tell myself that my feet were there. Once it started wearing off, I soaked my feet, more lotions and potions to begin my day.
Don’t think my cancer job is over. It continues with more claims not being paid by insurance along with the big interpretation of the results of all the samples taken back in August. It seems that my sample doesn’t follow the average ovarian cancer patient because why would it? The reports provide conflicting messages that the drug that I am currently on will work, but eventually these cells would be resistant or would they? These are all reports at the cutting edge of cancer treatment which tries to create a picture as to what drugs will and will not work on the cells. Of course, this may be fine in the lab, but a real person is another thing. All interesting info, but you have to try to not get too caught up in the “story”. Lucky, we have researchers on my team who have been there for me since the beginning because I am outside the bar chart of ovarian cancer patients and mostly because they really care. Much time was spent discussing this and many ideas, some of the same were discussed. The next plan must start moving ahead because this is the game I play along with my rock star husband who is always 5 steps ahead and really understands all the cytology and language of these cancer cells gone wild. Gotta a love a man who can understand that!
Tomorrow is my visit to start the drug combo again and countdown to Alex’s bar mitzvah continues. I cannot explain how happy I am that I am getting chemo this week instead of next week. Yes, that may sound strange, but I plan on being fully present for the event. Looking forward to enjoying every second. Until then, the fog may enter, but the sunshine is just around the corner. Find your sunshine-hey, eat some candy corn, apples, or anything Halloween. You are never to old for a pumpkin patch! If you live around here, go to Tanaka and pick yourself some fresh carrots and a pumpkin from their patch. Make your kids go even if they are whining and wish they were with “their friends”. Take some photos and compare them to old ones. Just enjoy the moment…
Hagop Kantarjian: High cancer drug prices are harming patients because either you come up with the money, or you die.