Leah Rule's Journal
Groundhog Day (the movie)?
Written Oct 16, 2012 11:01amMuch as Leah's last post-Never A Dull Moment-started out, so does this. "After hitting a wall in regards to my ailing digestive issues", Leah was once again, yesterday (Mon 10-15-12), admitted into the hospital in Eau Claire. After continuous vomiting and pain thru the weekend she needed some relief. Upon admittance, she was placed on the lovely fourth floor, of the new wing, where the rooms are modern and spacious. Dr. Basu lead the "charge", ordering blood work and hydration. The blood work showed moderate/severe dehydration which was causing kidney problems (back pain), exhaustion/weakness, etc. She was also given meds to ease her pain. Next she was put back on TPN (a liquid nutrition treatment that is "fed" thru her powerport directly into the blood). This is the same treatment they used last January (for 10 days) when her digestive system shutdown. She will realistically be fed this way for the next few days, until she stabilizes and gains some strength back.Ok. Next is the one test result that, in the former post, we had not yet received. One week ago today, Leah went to Menomonie to have a follow up with Dr. Basu and get hydrated. ( Note-we figure that in the past two months, there has been roughly 7 or maybe 8 days that Leah did NOT vomit, so she has been getting hydration more often ). She was informed that the blood/tumor marker, known as CA 19-9, was elevated, up in the 300 range. Normal is below 50. So they took another blood draw and sent it off to the lab. Those results, testing the same marker, have gone up another 70 points in the 2 weeks between the 2 tests.So it is now being discussed about starting a new chemo round later this week. This time the thought is, only 1 med, a moderate amount of it, weekly, with weekly monitoring of the blood markers, to rate the effectiveness of the med. this new med/chemo has a name I'm not yet familiar with, though we're told it goes after pancreatic cancers. We will know more about this as the week progresses.As I sit here waiting for Leah to call back, I see the caring bridge photo and My Story description that begins, "On March 28th, Leah received the news.....". In the photo, taken that evening when we got home, I see or maybe rather remember the shock and the hope that we felt. It's hard to believe that was over a year and a half ago. Leah has been through so much. These days, her appearance has changed (on the rare occasion that we go out in public, she is often not recognized) and she wears the signs of her battle proudly. But it has taken a toll. She is so strong and brave, but also so weak. She is tired. She needs a break. So I sit here, praying and hoping that her body will react in a positive way to the treatment....and her digestive system will wake up, much as it did last winter, and she can be able to eat some solid food, and avoid more chemo, and be able to come home, and sleep, and walk, and go out for lunch, and draw some new pictures, and write some new stories, and play some music, and laugh, and live. Come on universe, please give Leah a break. She deserves it.Leah, I love you and miss you. Please come home sooner than later......Rob
Never a dull moment
Written Sep 29, 2012 9:57am
Wednesday, September 26 saw me hitting a wall in regards to my ailing digestive issues and once again, at my pleading, we headed to the ER in Eau Claire to be admitted into the hospital. The rest of that night is a bit of a blur to me as the pain dulls my memory and the pain killers take them away entirely.
I can tell you that prior to admission the pain in my back had exploded, I was throwing up anything I ingested within minutes and I had developed excruciating leg pain that was making it difficult to walk and causing shortness of breath. Apparently I like to wait until my body is ready to shut down before going to the hospital.
We were pleased with our ER doctor who seemed more intent at getting to the issue of what was causing all of my distress rather than just easing the pain and sending me on my way. He ordered blood tests, a CT scan and an MRI (my first). Mom and Rob were with me until 3:00am when the CT scan was completed and I was finally moved to a room to sleep for an hour. Rob slept on the chair in the room with me and Mom headed home to check in on our brood. In the morning I was able to wish my gorgeous husband a happy 50th birthday. How can I ever make up to him for all the losses he has coped with during our cancer ordeal? Some birthday.
The ER doctor took me off all of my meds and ordered only IV meds to give my stomach a break. In retrospect I was probably vomiting the majority of my meds anyway. At this point I am passed off to Dr. Basu and a GI specialist. Dr. Basu gave us the good news that there was nothing of significance to report in the CT scan. Dr.GI gave us the bad news that a spot on my intestine could be seen on previous scans but not this one. He believed this spot could be an adhesion from surgery or a cancer tumor. Prognosis: either my bowels will kick in or they won't. If they don't it is an issue of surgery and given my cancer the words colostomy bag get thrown in as well as "matters of last resorts" or something like that. So again I am left with very different opinions.
This has been an ongoing issue. If it's not cancer, Dr. Basu can't treat it but of all 4 GI specialists we have met or consulted with look at my records, see my cancer and wipe their hands of me. We have been extremely frustrated although we can also understand to an extent how this happens. Communication seems to be a key in resolving issues like this but we don't see that happening.
After wishing Rob happy birthday I am whisked away for the MRI and a paracentesis. An MRI is pretty intense. I thank Mark Mallman for giving me the idea to think of the loud noise scape as my brain waves playing music. Meditation came in handy in that xray coffin. My awesome radiologist team performed my tap and took out 3.5 liters which is down considerably from last time. The ascites is sent to the lab for cytology testing. I can report that there was nothing beyond normal wear and tear in my back and I was thrilled to hear that the ascites cytology was negative for cancer cells.
Back to the issue of eating. I was put on a fast when admitted. After 36 hour Dr.GI moved me to clear liquids which I began at a snail's pace. Imagine being afraid to eat a Popsicle. That was where my mindset was. I managed the Popsicle and a large glass of water and called it a night. I did not vomit. In the morning my nurse listened to my belly and confirmed that it was noticeably more active. The fast which allowed my organs a rest had helped them to regain energy. Dr.GI felt this was a positive sign and advised I move to full liquids. With great trepidation I had hot chocolate and chicken broth. I became so anxious about the idea of vomiting that my nurse had to talk me into trying sherbert. You'll never know if you don't try. By the end of the night I had vegetable broth and lemon meringue pie from the transitional diet menu. Everything has been staying in or processing out, although my bowels are not near full functioning yet.
Regarding the disparity of Dr.GI's earlier prognosis I consulted with Dr. Basu. He agreed that the spot on the scan could be any number of things but did not jump to colostomy bags and death. His outlook was that if that spot was determined to be an issue, surgery would be the course of action but there is no reason not to think that they could cut it out and my cancer problems could be over. This guy just has magical bedside manner. The message is essentially the same but he leans so far to the positive outcomes that the negative possibilities are just after thoughts. He also let me know that 2 of my 3 tumor marker tests show that my levels are still in normal range. We await one last test result but given all the other cancer negative results we are hopeful.
This morning I had toast. I await my parents return and will be going home to manage my own diet and be at the place I love the most with the people and critters who mean the world to me. I have had moments of darkness, my mind goes to places I assume no one can imagine. My caretakers do what they can with what little understanding they have to pull me out. It's a difficult task when I've become set in my ideas. I am returning home now prepared to take baby steps and treat my digestive system as the fragile machine it has become. Slowly I will grow strong and with strength comes great hope.
I love you all and thank you time and again for your love and support. Truly- Leah
Spoke too soon
Written Sep 15, 2012 1:09pmA couple days after my last journal update my digestive system decided to conk out on me again. I have been vomiting every night although we think some of the food I eat is getting through. Regardless, it has been very difficult and exhausting. We don't know why this is happening or how to turn it around. Each morning I wake hoping that the new day will bring us good luck.I went to the hospital yesterday for an IV hydration which made me feel a lot better. They told me to come in more often. We will be doing that. I am trying a liquid diet as well to see if I have better luck with that. My tummy starts rolling and rumbling when anything is put in it so perhaps a more gentle approach will help.I wish I had better news to share. I do feel relatively good at the moment and at this point moment to moment is easier than day to day.Much love,Leah