Monthly Archives: November 2012

The James at Christmas Time

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Me and tree At the front entrance to the main hospital.

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Tree and more trees

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Sleigh with presents in the entrance to the James.

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This is similar to how the front tree looks in the daylight. Like someone threw toilet paper all over a pine.

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Jeff teaching me a card game that gets more difficult and requires more thought as the game progresses. He should know better by now.

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Why am I in the hospital? I feel fine!

 

I’m pretending my hospital room is a hotel and I’m away on a little mini-vacation. Never mind the tubes, wires and nurses who barge in with scary yellow fluid to inject into my veins. It’s mostly peaceful and I have almost endless back episodes of Gossip Girl on my iPad to keep me entertained. This time I was able to plan ahead for my visit and pack my own bags which means I have my favorite yoga pants and tank tops instead of whatever nightgowns Jeff thought would be appropriate for the hospital. I also drove him crazy with instructions for while I was gone even though he has managed to take care of the house and kids just fine in the past. For the first time I walked up to my room on the 8th floor from admitting instead of being wheeled up in a morphine haze from emergency.

I am here for a 4 day series of chemo that requires an inpatient stay to monitor blood and urine. The doctor called us earlier in the week with the news that my transplant has been delayed and I need chemo to keep the leukemia away while we wait. Jeff and I just shrug and say, okay. At this point we just do as we’re told to get me better and we don’t think about possible consequences because it’s out of our control. We take one day at a time. It’s such a cliche but the only way we are surviving. Today I feel good and Jeff got the kids to the sitter and got to work. So far a success!

The doctor actually called and then emailed about the chemo while we were at Jeff’s dad’s memorial service. She hadn’t heard the news yet. I’m not going to discuss what it feels like to watch someone die from a very similar disease to what I have because I’m sure people can imagine. I won’t linger on my daughter who sobbed for the entire service. My husband is exhausted from caring for me, the kids and his mom and dad but we will recover. But I will talk about how loved Dave was. He was deeply loved in all ways by all 4 of his children, his wife and all of his grandchildren. The community turned out in large numbers to show their love and support for Dave and his family. Even though he did not attend church services the church’s women’s group provided food for the whole family after the service. My kids were momentarily comforted by pie and cake. They have had some questions here and there as expected. Some of the questions involve me because they know we both have leukemia. We assure them that my cancer is currently gone and the treatments are working and the doctors are doing what they can do to make sure it doesn’t come back. Then they go back to their Tv show or video game content with our answer.

The tentative date for admission for the transplant is January 8th. They had to schedule around the donors wishes and the holiday. I actually have two potential donors but they picked the best one.

I’m looking forward to a restful quiet day. Lunch is teriyaki salmon from the kitchen. It’s risky, I know, but they can always bring me a sandwich if it’s horrid. I’m having a lumbar puncture with intrathecal chemo after lunch and then Im taking meds and a nap. A friend is taking the kids for an over-nighter so that Jeff and I can have date night at the hospital tonight. Yay!

What I’m thankful for

I’ve been back at home for a week and a half now. Maybe two weeks? I lose track. The days blend together. I’m resting a lot by staying in my bed in my pajamas and watching movies. The bedroom is also the warmest room in our rental house so I tend to stay under the covers with my knit hat on because I’m freezing most of the time. Jeff comes home from work and puts on shorts because he says the house in an inferno. I still have flashbacks to ICU and I was shivering cold there and I still haven’t fully warmed up. The docs say that the meds and weight loss make me feel cold.

My pancreas has not fully recovered but I am getting stronger. I still have a hard time digesting food and I have to eat small portions. I can’t digest any kind of wheat flour and potatoes are rough too. The doctor prescribed pancreatic enzymes to take orally with food to help with the digestion. I take 3 of these ridiculously expensive little pills that smell like paint with each snack and meal to help absorb nutrients. I’m not putting muscle back on as quickly as I have in the past even though I’m doing physical therapy because my body isn’t absorbing nutrients and fats. I’ve read that acute pancreatitis can lead to chronic pancreatitis but I’m really hoping to get better soon. My doctor appointment is next week and she sent me home at the last visit to gain weight and increase the protein levels in my blood. Gaining weight is hard when you can’t digest carbs and fats.

Although I am frustrated with my slow progress I have to remember that it is rare for a person to be in ICU as sick as I was and then two weeks later be out walking around the block. I think of my neighbors in ICU that will not make it back out. The 17 year old boy with a brain tumor who was moved to a long-term care facility. The 70-something year old nun who communicated only in writing who was told that her cancer had become uncontrollable. I heard all of this from my spot stuck in bed.

And I think of my father-in-law, Dave, who as of now is at a hospice center. The first dose of chemo did not get rid of the leukemia and he has opted out of further treatment. He is at peace. I have almost taken it for granted how successful the chemo has been for me. I mean, one of the chemo drugs may have permanently messed up my heart and another drug my pancreas but the leukemia is in remission. That doesn’t always happen.

Moving forward the next step is bone marrow transplant. After the pancreatitis what was a gray area and difficult decision has now become completely clear to all of my doctors. I will not be able to tolerate 2 more years of chemo considering the damage that the specific drugs have done. We need to take the option for transplant for a cure. I have a donor who is a 100% match and may or may not (but probably) live in Germany. The doctor is currently scheduling around the holidays with the donor. I need to get stronger and they need to schedule the donor’s surgery and no one wants to do that before Christmas. We are likely looking at the last week of December to check into the James for my 6 week stay unless he wants to do it sooner. I’m choosing not the think about the risks and all the horrible things that could happen with the transplant. Lots of people do fine and there is no way to know. Who would have guessed that my organs would react so strongly to chemo? We just have to keep doing one day at a time. Today I have physical therapy to continue getting stronger and I was approved for a dentist appointment. Yay! I’m way overdue for a cleaning but I wasn’t allowed. My blood count levels are almost normal so I’m using this break as an opportunity to get these things done.

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In my downtime I sit on the bed with my kitty and do my nails.

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I am Jill’s Inflamed Pancreas

Finally back at the James. I had my own temperature controlled room with a bathroom and I was allowed to move around and take a shower and most importantly I didn’t have an urge to kick half the nurses in the teeth. It wasn’t entirely their fault. According to Jeff I’m not the ideal patient under the influence. I tend to mess with my tubes and cables. I had an arterial catheter and a central venous catheter in addition to my regular Hickman line. Jeff would scold me not to touch them and I told him I would touch it if I wanted to.

Back at the James I was much more comfortable but still had a ways to go. I was given Lasix to start getting the water weight off. That stuff works fast. Too fast for me. On my second night I started having an irregular heart rate. I was hooked up to monitors and the nurse would come in to check and then the night on-call doctor. By morning my heart rate had increased to 160 and stayed there. Another emergency response team was called and a group of nurses and doctors hung out in my room for a couple hours trying to get it down. They were finally successful with a med and my heart rate stayed down the rest of the time.

The rest of the stay at the James was trying to eat little bits of food here and there, physical therapy, fluid and electrolyte balance, blood transfusions and rest. I was released to go home on Thursday and I’ve been here working on the food and fluid thing since then. Proteins are easier for me to digest than carbs so I’ve been having hard boiled eggs, cottage cheese and small portions of meat. The key is still to eat only a few bites in a sitting and eat about 5 times a day.  I was told that the pancreas has to work harder to digest carbs and also my protein levels were very low from not eating anything for over a week. I was also given some supplement drinks in the hospital. They are like fruit juice rather than the horrid chocolate milk ensure shakes. I have one of those with breakfast.

I’m walking independently around the house with the walker that physical therapy sent me home with. I’m still very weak and it is nice to have something for support getting around so I don’t fall even though it is embarrassing and I feel like I’m 86 years old. I have to take it to the hospital with me Monday for a labs appointment and I’m already dreading being the really sick girl with a walker. I should be thankful that I’m not in a hospital bed anymore but it’s such a dehumanizing experience to be so sick and at such a young age.

Also this week we meet with our primary doctor to discuss the next step in treatment which will most likely be transplant. I had a bone marrow biopsy this week that came back clean and I am still in remission but now that there are two chemo meds that I cannot take (Vincristine causes orthostatic hypotension and tachycardia and Pegaspargase  caused the pancreatitis) we need some type of long term solution for a cure. Bone marrow transplant is our last option and it is terrifying. The doctor wants to use actual bone marrow from the donor rather than stem cells. Most allogeneic marrow donations are done through stems cells now but the side effect that the doctor fears most for me is graft vs. host disease (GVHD). This is a common effect of transplant and can be mild to severe and acute to chronic. The risk is reduced with actual marrow harvested from the donor. My donor is anonymous but is a perfect match. I hope to have a couple weeks at home with the family before I check back into the hospital but we will find out more on Thursday.

Here is a picture of my friend Gabby holding my hand during my bone marrow biopsy. It was during the most painful moment and she wiped a tear from my cheek. I have more graphic pictures and video from this procedure but I’ll let those be by request only.

 

And not to get too serious, my dad sent me a song all about the pancreas:

The Pancreatic Revolt

14 days ago I was doing fine and enjoying a great meal provided by my friend Jon and a movie on a Friday night. Meanwhile, my pancreas was deciding that it had had enough chemotherapy and was not going to stand for it any longer. I went to bed feeling well and woke up at 4:00 am with a stomach ache. My stomach felt hard and bloated with a sharp deep pain inside behind my belly button. I woke Jeffrey up and took some antacids and pain medication but I couldn’t go back to sleep. I stayed on my hands and knees with my head down for the rest of the night and into the morning. I’ve had pain not entirely dissimilar once at the hospital and it turned out to be acid indigestion and constipation. Yes, I had an abdominal CT scan to tell me that. So, I treated this pain as such. I sat down to eat a little oatmeal around 9:00 and I immediately started vomiting after the first bite. My dad and Jeff were busy moving us into the house so I miserably called the doctor myself and was told to go straight to the ER. We packed up and headed once again to OSU Medical Center emergency department.

By the time we got there I was in so much pain and so out of it that I don’t have much recollection of what happened between triage taking us straight back and earning a room on the 8th floor. At some point we were given a diagnosis of pancreatitis, an inflammation of the innocent enzyme producing organ located behind the stomach. This was most likely a side effect from one of my chemo meds. I was started on IV morphine but even that could not erase the pain but did make me hallucinate. I was told I would need to go on stomach rest to let it heal. This means no food or drink by mouth until the organ becomes peaceful again.

Day 2 into the saga the story got worse. My body started to go into shock because of the disruption. My blood pressure dropped low, very low and would not come up. My room was full of doctors and nurses trying to fix it. The doctors told my dad who was there with me that he needed to call my husband to come in. I earned my first ever trip to the ICU.

ICU was an experience. Those nurses are there to keep you alive. And for the first few days that’s what I needed them for. The solution for my blood pressure was to give me fluids. I was given 22 liters of fluids in a day or so and I gained 50 lbs from that in spite of not eating or drinking. I actively refused intubation. I don’t remember much but I remember a doctor wanting to put a tube down my throat and I remember saying no. I refused intubation twice. I’ve worked in a hospital enough to know what intubation means and I wanted to avoid that. This means I was stuck with a pressure oxygen mask that helped me breathe. It was insanely uncomfortable and I fought it at times but the nurses would not let me take it off. I had hallucinations from the morphine and didn’t know where I was most of the time and didn’t understand why I couldn’t move. Jeff was told by the doctors at one point that they had done everything they could do and they had to wait and see if I would turn around. The endocrinologist were starting to talk kidney dialysis because my organs weren’t processing. But, it turned around and I started to get better. There was some discussion that the cancer hospital had over medicated my pain so they cut down my meds which means I was in pain most of the time. I hurt in the middle of my belly and it radiated around the sides and to my back. The nurses had to turn me to change bedding and the pain was excruciating when they rolled me on my side. But after a few days I started getting better. With that I also started to become more demanding.

ICU likes their patients quiet and sedated and I was no longer sedated. We had to wait for a bed back at the James and my ICU stay ended on Saturday a week after it began with a move back to the cancer hospital.

To be continued…

 

 

Hospital Update III

Jeffrey again.

Sorry for the delays in updates. Between crazy ICU visiting hours and getting kids to where they need to go, it has been hard to keep everyone up to date. I still owe the folks I update via text updates.

I am happy to report that even I have underestimate the fight Lauren has left. After yesterday’s turn to the wrong direction, I had a high energy friend of hers go with me to visit her at 1pm. At this time Lauren was on a pressure oxygen mask that literally helped her breathe for her. She was suffering from delirium and I felt was in the brink of turning this thing around or getting worse.

By 9pm last night she was back off the breathing oxygen mask and on the nose oxygen. Her Blood pressure was stabilized and seemed to be staying that way.

This morning at 5am she had made it through them night without the breathing machine. The nurse whom she butted heads with told her she needed to be able to sit in a chair to get out of the ICU. Lauren immediately said, “then bring me the chair” at 5am. The nurse said it was too early and one was not available. Lauren replied right back with, “then let’s practice!” The nurse, who has already learned that arguing with Lauren is a losing battle agreed to practice. So we got sitting up on the side of the bed. I knew then the fighting Lauren was back.

At this point she is just waiting on a bed in the James to get released. That might happen tonight. She still needs the nasal oxygen and she still isn’t the most comfortable, but she’s back.

I think even I have underestimated the fight Lauren has left. Yesterday I felt like we were on the brink of either getting this current hurdle turned around or watching things get worse. I brought her the mental support (thanks Jon, you kick ass) for the 1pm visit. By 9pm, Lauren was showing this thing who was in charge.

Lauren, you will read this post soon when you catch up on your blog. I love you, and I am so glad to have the fighting Lauren back. You have shown strength that is for most unfathomable. I know sometimes you don’t feel strong, but the doctors even see it in you. We will keep crossing these hurdles as they come. We can do it.