Monthly Archives: February 2013
There is that moment coming home from the hospital when you have to carry your purse and drink, walk around the car and up the steps to the house and you realize that you are still sick. We stopped by Tim Hortons for a coffee and a donut and visually scanning the menu and communicating my order to the cashier was a challenging event. I was reminded of my stroke and TBI patients in the hospital who sometimes had to start from scratch in learning these basic fundamental skills. Sometimes I wonder why they let me leave and I get nervous about taking care of myself. But it feels so nice to be in my own bed again.
Yesterday my abdominal CT scan was normal. I should have counted all he scans I’ve had in the last year but just guessing I’d say I’ve had 10-12 CT scan both out patient and inpatient. I again had to drink the contrast fluid. That stuff is so awful. A doctor told me he completely understands what patients go through because once he had a bone marriw biopsy done because he needed fresh healthy cells for the lab. Yeah, thats exactly what we go through. So I drank the contrast and thanks to two nausea meds I did not throw it up. I passed my pregancy test to the surprise of no one and I got contrast fluid injected through an IV line that the radiation tech had to place. I think she stabbed me with the needle instead on inserting it because it’s still sore and is bruised. I had to explain to her what my central line was and that she couldnt use it for the contrast dye and needed to start a peripheral line. The dehumanizing experience of going to procedure in the hospital is in the walk down and back up the the room. Well, I don’t walk. I ride. Transport comes to pick you up in a wheel chair. My IV pumps have to transferred and come with us. I have to wear a mask that covers my face. I did not put a scarf on my head but I needed two blankets on my lap and one on my shoulders because I was so cold. I become hidden and anonymous with all the layers and I passively sit through our journey past other floors and healthy people mixed with the sick. People see me but they don’t because I am a sick person.
I had a massive migraine last night in the hospital that included vomiting and dizziness. I got all upset and didn’t want to ask for meds because they would have to call the doctor and I worried that they would want to keep me longer. The nurse called anyway and he brought me an ice pack for my head and waited for my medication order to come in so I could go to sleep for the night. The med took care of the headache and I slept until 4:30 am.
This is where the fun started. I sat up on the edge of the bed so that I could go to the bathroom. My pajamas felt wet in the front and something was dripping. I felt around and there was a loose saline line in the bed not connected to anything. The saline had spilled. Then I saw that my pajamas were wet with blood. Yeah, blood in my bed and on me. I thought of a movie and started looking for a dead animal head like a horse in the bed. I looked at my central line and the cap that should be on the end was not there and blood was dripping freely from the line. I gave myself just a second to absorb this. I held my line in my hand while watching the blood, MY blood, dribble out down my front and onto the bed. There was something sattisfying about holding my inconvenient and perplexing blood in my hands and letting it run. My blood is something I have no control over and I passively let nurses take it out sometimes daily. I get safe good blood from other people and I let that mingle with my own. Now, my blood hasn’t really seemed like mine since the transplant. It’s someone else’s cells and DNA flowing through my body but this time when I had it in my hands I claimed it. I possessed it. Then I snap closed the clamp to stop the bleeding and called for a nurse. I said “blood” and “line” to the receptionist and within seconds two nurses I didn’t know were in the room to fix me. I told them I shut the clamp so the bleeding stopped and they congratulated me on my genius. I had to change clothes and take a shower to get cleaned up while other people changed my bedding and cleaned the floor. I got to go back to sleep until 8:00.
The doctors came in and Dr Jeffrey was given credit for suggesting that we add back in one of my heart meds that was changed even though it was my amazing nurse Larry who got me the hookup on meds and always does. The addition significantly improved my vertigo and although its not 100% better the doc said I look well since the medication change and the surgeons approved my discharge and there was no reason to keep me unless I would feel more comfortable staying. Hah! I called Jeffrey to come pick me up.
My Monday appointment to the James for blood labs went okay. I did have a blacking out episode when standing to go to the blood draw room so I scored a wheel chair. My BP was 89/55 but no one was especially concerned since this isn’t a new symptom to me. I was able to leave after just a bag of fluid.
On Tuesday occasional lightheaded ness and dizzy spells where replaced by a constant vertigo and a low grade fever (100.0). I called the clinic and of course they want me to come in. My mother-in-law suggested that I pack a few things for the hospital since she figured they would keep me here. I said, “No, that is bad luck”. Do I believe in luck? Thankfully she was nice to bring me some clothes, power chargers for devices and slippers this morning after rush hour.
At the clinic my BP was low again and low grade fever and dizziness so they drew blood cultures to test for infection and said they would check me into the hospital overnight. I was admitted to the 3rd floor BMT unit. I’m on a different wing than before but the nurses and doctors are the same. Everyone was just a little too happy to see me. I saw the doc and the NP and we talked about what could be going on. I have had increasing pain in my previously diagnosed anal abscess area. The doctor on rotation came in and I told him I was waiting for the ass doctor. He said that he’s not the ass doctor but he may be a doctor who is an ass. He did an exam and pointed out that he “doesnt see anything impressive back there.” Then he awkwardly stammered ” I mean, as far as your sore spot looks”
On Wednesday the colorectal surgical team was called in because I finally have the blood counts to support a procedure if necessary. I was also scheduled for a CT scan to diagnose what it is. Surgical team came back and said that there doesn’t appear to be an abscess but there is a fissure which they can treat medically. I hope I’m done getting anal exams (insert inappropriate sexual reference here).
Next issue is the persistent vertigo that has been increasing in intensity since admission. My heart rate and BP are normal. Temp was low grade fever last night but normal today. The rotation doc felt that I had an infection and the other symptoms are related to that. Since an infection has been ruled out the vertigo needs to be investigated further so that I can get out of here. I’m already going to be here two nights and I don’t want to make it three. On Thursday Dr Vasu dropped one of my heart meds since I didn’t seem to need it anymore and she thought it might help lesson the dizzy spells. The vertigo could be some kind of reaction to stopping that med so the next trial is to add it back in at a lower dose.
The view from this room isn’t bad either. I can see the James courtyard Hope statue. This is where we walk to when the weather is okay and I’m aloud to leave the floor. For this stay the only time I will hopefully leave the floor is when I go home.
And to the left there is a dark, sunken alcove in front of the School of Dentistry that holds a more formidable looking statue of some old dentist dude. This secluded spot feels like a chamber because it’s surrounded on all sides by eye level mossy concrete. We’ve taken the kids here to run around. Kids who’s moms have cancer get to turn anything into a playground.
This morning I had to be at the hospital at 7:30 am. That is so early for me that it feels like the middle of the night. Don’t forget that I’m not well and I sleep until noon. Don’t judge me. My caregivers wake me up at 9:00 am for medication and then I just go back to sleep.
Today is day 37 post transplant. I haven’t shared my numbers in awhile so you will all be happy to see that I’m almost a normal person now.
WBC 7.5 (normal range 4.5-11.0)
HGB 11 (11.7-15.5)
PLT 198 (150-400)
My potassium levels have been normalish which is great because I hate taking those pills but my magnesium has been low since the transplant. I got IV mag every day inpatient and also on all my follow-up check-ups but last time it made me sick. I’m now on 9 pills of magnesium supplement a day to try to keep my levels up. I’m up to about 30 pills that I take a day in total not including my “as needed” medications. I did get to cut out one of my heart medications because I might be getting better from the damage from the chemo.
Bria, one of my best buds from Tucson, is here to take care of me and help out around the house. She has already reorganized the kitchen, done multiple loads of laundry, vacuumed and went to my hospital visit with me. But, mostly she’s here to lay around in pajamas with me watching movies. I have been laughing so much that my abdominal muscles hurt. Tomorrow we have big plans to go to my first post-BMT physical therapy appointment and then in the afternoon (if there isn’t a snow day) we will get Amira ready for her father/daughter dance at school.
With all our sitting and laughing and talking I still have reminders that I’m not well. Nausea hit this afternoon complete with sweating and hot flashes. Bria’s helpful answer was “The rule is puke to the right. It works on roller coasters so it probably applies to the bed too.”
It’s here. It’s happening. I have a bit of Graft-Versus-Host-Disease starting. I know I’ve discussed GVHD before. From the beginning I was told this is my biggest risk. Although the doctors are concerned they are not surprised. I have a 60-80% chance of developing GVHD with my type of transplant (ablative allogenic from unrelated donor). It’s just a touch so far and Jeffrey is happy to see it because it shows that the graft is working. Also, according to research , long-term survival rates are improved when the patient presents with a bit of GVHD either acute or chronic. This is because the graft not only attacks the host but also takes on any last remaining elusive tumor.
What does GVHD present as for me currently? Mostly skin afflictions. I have red blotches on my arms and legs that get worse in heat. Getting out of the shower the sides and backs of my legs are a blotchy red while the fronts are a mottled purplish gray color. Kinda freaky but it clears up. Holding my laptop on my thighs or arms will produce the same red blotchiness that fades. My skin texture is different. It’s a little rough and crinkly. I’m still getting over the Demodex infection. so it’s difficult to differentiate the rash on my face and chest. Dr. Vasu became concerned at my Thursday appointment because I had a new outbreak on my ear and back. She called the dermatologist who said Demodex does not present on ears and back typically. She started me on prednisone to treat the GVHD. I use thick Eucerin cream from the pharmacist. I’ve gone through a 1 lb tub in a month. Maybe it helps or maybe it just makes me feel better.
I’ve been nauseous and vomiting some so the doc is concerned about GVHD of the GI. I’m on two different anti-nausea meds around the clock. Even so, I still don’t have an appetite. I force feed myself enough, I think. And when I do eat I try to make it count like peanut butter or eggs or some type of protein. The predisone makes me feel hungry but my stomach can’t take it. After a bite or two I have to put it away. If I’ve lost weight at my Monday appointment the doctor has said that she will do a GI scope to look for GVHD. Dr. Jeffrey thinks I need more salt in my diet because I don’t hold on to fluids. They give me a liter of fluids at the outpatient hospital visits and I pee out 3/4 of that before we leave. His solution of more salt included a trip for a burger and fries. This is his cure for all maladies of course. I did eat half of a tiny burger and 3 fries but then I was up sick all night. Xander blames it on the fast food. This gives him more fodder for his rant on the “substandard” food industry. Anyone who has watched my children has heard this lecture. Apologies.
My biggest fear that I mostly choose not to think about is the GVHD turning from mild to severe and becoming chronic as opposed to just acute. I can handle this but it’s scary if it becomes chronic. I have heard from past BMT patients that some feel they have traded one disease for another. It is something that has to be managed long term. It’s another wait and see that is out of my control. Maybe it will just go away.
According to the doctors I am no longer considered to be a leukemia patient. I am now a transplant patient. From now on if I go to the hospital I go to the BMT unit on the 3rd floor. I’ve been thinking more about my stay and remembering things that I didn’t pay attention to at the time or wasn’t aware of. I think of the perky sweet nurses who are always positive and yet cried with me. The nurses who knew when I needed it quiet and dark and came in wordlessly to take care of meds and drips. They were happy to see me sitting in the chair or walking but understood why on the days I could not get up. The PCAs who gently suggested I try to get up and take a shower or a walk and then helped me do so and tirelessly walked around the bed to take my blood pressure on my left arm because of my right arm lymphodema precautions. The PCAs and nurses who cleaned my shit and piss and vomit without a word (most of the time). The doctors who stooped down to eye level when I was laying down so they could talk to me. They would reach around my back to listen to my heart so that I wouldn’t have to move to sit up. And my primary nurse who took care of all the things and came into my room throwing jokes, singing songs and goofing off as if it was his mission to make me laugh everyday. It always worked because I did laugh everyday. I think I cried every day too. He is compassionate without being patronizing and exactly what I needed. I almost feel sorry for all my inappropriate comments and harassment.
I’m still overwhelmed by the experience and I look back wondering how I even did that. The truth is that I did what I had to do and I am surprised by my own capacity when faced with the choice of this or death. I believe that I am getting better and while it is a long time until they use the C word (cure) I am thrilled to start thinking about the future again. Like summer vacations and going back to work. But starting small Amira says she wants to go out to dinner as a family. I’m not there yet but hopefully soon.
Family movie night!
I have made it through another day. Its always a relief when I make it to bedtime without major incident. I’ve used my trembling hands to open my water bottle and take my evening pills. Jeffrey will have to wake me later for my midnight doses.
I’ve been doing great at home. Well, I feel pukey a lot and super tired all the time. I’ve only left the house to go to the hospital and once to stand on the front porch and watch Amira on her scooter and I have no desire to venture further. This means that I had to miss the play that Xander was in at school. He had the part of a virus. The computer kind. I have video proof that he not only asked to play this role but that he enjoyed it! Unfortunately, with my sad little white count I like being close to my bed, safe and warm. This is fine with Jeffrey because if it was up to him he would have me locked in a room in the basement. Possibly chained to a wall if I ever tried to escape. He’s a big fan of the hospital bed alarm which thankfully we don’t have access to here at home. He may be over-protective but he does take good care of me.
My rash is starting to clear up after several days of severe itching. My magnesium levels are still chronically low and my medication was increased. I was trying to supplement with Reese’s cups (which are apparently high in magnesium) but I vomited Reese’s cups the other night so those are probably out permanently. Homemade ginger cookies are better for digestion. I’m still not eating great but I’m eating better than when I was in the hospital. I haven’t put on weight but I’m getting stronger.
I have started my twice weekly appointments at the James for check-ups with the hematology department. Monday’s blood work showed steadily improving numbers but a low blood pressure and magnesium level. I stayed for a 2 hour saline and mag drip while I slept in the recliner. Tomorrow we see Dr Vasu.
This week we received a check from the Be The Match Foundation. It is a grant for $1500 to be used for medical and travel expenses. This is the same foundation that we raised money for last summer when I was first sick. Read this. We will participate in the Be the One Run again this year with a goal of raising money for the foundation and raising awareness of the registry and stem cell donation process. This grant was unexpected and I feel proud that this organization gives money directly where it is needed without much waiting time. I’m hoping that we can have an even larger team for this years race. Jeffrey better start training if he wants to win first place in the Master’s category again! I have a goal of just being able to walk the 5K.
I’m home today and doing pretty well. Only thing that is bothering me is the intense itching from the Demodex. I’ve been applying witch hazel to my face and chest but it still wasn’t enough. I asked Jeffrey about the cream at around 3:00 and he said “oh yeah, that’s probably at Walgreens.” I think my evil stare was enough because he ran out to get it. He also picked up a giant Kit Kat for Dr. Vasu for the bet I lost when in the hospital. We will give it to her Thursday. I was convinced I had jaundice. I did not.
Instead of sitting here focusing on how much I want to claw my face off I attempted to prepare a slide for Xander’s microscope so we could entertain ourselves with pictures of mommy’s face bugs. Between the witch hazel and Metro Gel 1% I can’t find anything to scrape off to look at. I need oil as a carrier but I have no skin oil. Being at home I don’t have someone checking me every hour and telling me my blood test results daily to tell me how I’m doing. Instead I have to go by how I feel.
It was so nice to be in my bed last night. I think I slept on top of Jeffrey all night. I’ve spent the last month alone so a warm body was extra comforting. We have to keep the door to the bedroom closed to keep the cats out and it creates an inferno in our room according to Jeff. Amira had a rough time because she slept in our room the whole time I was gone and last night she had to sleep in her bed. She did go to bed but it took 20 minutes of screaming. Poor girl.
I slept until 9:00 am when my Lauren sitter for the day, Carolyn, woke me up for meds and to drink a protein shake that Amira prepared for me before she went to school. I was up for a few minutes and then went back to sleep until noon. Carolyn made me lunch of chicken and green beans and I started thinking of getting up for the day. I took a shower but getting up didn’t actually happen until Jeffrey was home at 3:00. I moved from the bed to the couch. I’ll start PT again next week but I’ll need to do something for exercise. It’s too damn cold to go outside.
It is always emotionally difficult coming home from the hospital after a long stay. The hospital is it’s own little world and the institution takes over. I become a passive player and do what I’m told (most of the time). I don’t even think in depth about the experience until it’s over and I realize how horrid it was. And I cry coming home. It’s overwhelming. I take a moment and have a good pity party for myself for the month I lost in trade for a cure. If it works of course it is worth it. If it doesn’t work I am beat down.
Three flights from Tucson to Columbus are being booked as my friends and my dad take turns coming out to take care of me. Mostly I just want to see them but I’m supposed to have someone with me for the first 100 days just in case.
I’m not sure what all happens while I’m gone but apparently it requires 6 tubes of toothpaste
My daily pills
This post was supposed to be published last night but it didn’t happen. I am now home and much too tired to write about that experience so I thought I’d post yesterday’s counts in the meantime.
Today was better. A doctor and a NP came in and woke me up with big smiles and cheer. They opened the blinds and sat me up. I grumbled a bit until I saw that it was 9:00 am. They asked me how I felt? Tired. They teased me about sleeping in so late when they’ve been up since 5:30. I said, “well I have leukemia.” They didn’t have a comeback for that. However, I did get up and start my day even though most of my day is spent talking to doctors. I had visits from 7 doctors today. 5 of them visited twice. They are working on getting me out of here and want answers to a few symptoms so I can go home as healthy as possible.
The biggest issue is my eating or lack of eating. I’m not consuming enough nutrition, calories or fluids. They let me go on just fluids and IV while I had the mucositis but now they want to see actual food going into my body. My ticket home is 2 liters of food and liquids a day. I have no idea how they measure food in liters. I know the nurses track every bit of intake. I choked down 1/4 of a waffle and 1/2 a bowl of cereal. Lunch was two eggs and a cookie. I was really trying to listen to the docs and eat. Dr Vasu stopped by and asked what I have eaten for the day. I said I ate a lot because I felt full and nauseous. She said it wasn’t enough. They are getting serious now. I know I’ll be able to eat better at home since the food stinks here. Don’t tell them but I let them count some of Jeffrey and Victoria’s food as my own. If what I had eaten wasn’t enough then I knew I would never meet their standard. We’ll see how I did tomorrow.
They other area of interest today and the issue that brought in the most specialist was a sudden appearance of a bright red and bumby rash on my face and chest. A group of dermatologists came in to see me. The goal was to determine the extent and severity of the rash and hopefully identify the cause. GVHD (graft vs host disease) is hiding just around the corner. Anything that could be GVHD is scanned, biopsied and grown in petri dishes to rule it out. They want to treat it immediately but don’t want to over treat because of risks.
So, the three derms head back up to look at more skin with a promise to return. They came back a few hours with the attending physician. He glances at me and said he agrees with his team and I do not have GVHD. I have Demodex Folliculorum. It a skin condition in patients with significantly lower immune system. It is also the parasite responsible for mange in dogs. The head doctor said that Demodex is a type of carrot shaped mite that lives in our hair follicles. At first I thought he was making it up. Ive had a hard distinguishing between fantasy and reality on occasion. Jeffrey was there. He confirmed that’s what the doctors were saying. My skin rash is from bugs. In my skin. Apparently when your immune system is down these bugs that live on hair follicles like eyelashes, eyebrows and scalp can over grow and have a party on my skin (doctor’s words). He then asked to see my IPad. He quickly navigated to pictures of these delightfully creepy characters.
Close-up of the little bugs
This shows the tail end of 3 mites that are buried in a hair follicle.
And what does it look like on a person?
Treatment for face bugs is time. My white cells will kick in and make everything better. The derm did prescribe a special gel to put on the rash but he said it probably won’t help that much and it will go away in a couple weeks. We would have picked up the cream anyway but it had a co-pay of $600.
So there you know, everyone has face bugs. Sometimes they can go crazy. I don’t have GVHD yet. And I’m home to really start recovering. More on that tomorrow!
The mornings are the worst. I’m tired, so tired. And this is when all the action occurs in the hospitals. NPs do rounds, doctors do rounds, nursing assistants want to feed you and put you in the shower but all I can consider doing at the moment is putting my hands back underneath my body and closing my eyes. This morning I woke up from a nurse checking my vitals and bringing me pills. I ate most of a bowl of cereal. I don’t remember what type of cereal it was. It doesn’t matter. They all taste the same. I didn’t tell the nurse that I don’t like cow’s milk because liquids all taste like water. I dutifully ate my cereal while she was on the computer in my room. I mentally prepare myself to make my body move so I can go to the bathroom. Most days I can talk my body into standing long enough to complete “oral care”. Somedays I just glare at my pills before putting my head on the pillow, eyes closed until 10:30. Usually it is 2:00 before I can consider doing things like walking, eating and talking with my eyes open.
Today is Day +20
Today’s neutrophil count is 640. That’s right, I have surpassed the goal needed to leave the hospital. I won’t be leaving until a few other things get fixed up. The eating goal is tough to meet. I’m supposed to have 2 liters of food and fluid in a day. Fluids are easier than food. And I have no idea how to measure food intake in terms of liters. They account for every bite. And every bit of output. This is the other area of concern for going home. Diarhea. I passed the test for C. Diff so they are watching to see what happens. They watch you very closely including full interviews about every time you go to the bathroom. Was it soft? hard? liquid? glowing? small? large?Jeffrey and the kids have all been sick with a lingering cough. The hospital isnt going sto send me home to a house full of “viral microparticles”. I love that since I work in healthcare they can use all the jargon with me.
Once we see how everything goes we are looking at a POSSIBLE release day of Wednesday. Yes, this week. It’s both exciting and scary. Exciting to see my kids who are coming through all this like troopers. Just like the last time. And the time before that. I’m thinking of starting a puzzle to work on with the kids during mommy time in bed. They are great about bringing stuff to me when I’m sick. I’m excited to see Jeffrey everyday. I can rest my head on him and snuggle up when I am cold. I can talk his ear off about random things while he nods from above his laptop. Annoying your husband is a lot easier to me than annoying the nursing staff.
It is scary because of all the things that could go wrong. There are so many things we have to watch out for. No one is counting out my medication several times a day or taking my blood pressure or temperature. The kids bring germs and want to jump all over me. There is my need to contribute to the household and do my share of the housework even though Jeffrey has it under control. Getting better is scary because what is “better” anymore?
Tonight for dinner I ate 4 crackers with cream cheese and a pint of hemoglobin. Dr Cohen came by for rounds. They usually do not transfuse until a patient is under 7 but he asked what he could do for me and I said a few more red cells would go far in helping me feel better. I know he wouldn’t have suggested it since I’m above their threshold but he checked my numbers and looked at my grinning face, looked at my numbers and agreed to a transfusion. Dr Vasu came in later, laughing behind her mask, asking me how in the world I talked Dr Cohen into a transfusion. I told her that he’s just trying to keep me happy. She said she told him that he does not know Lauren very well and I can be very convincing. Even so, they brought in my first transfusion of red cells and it was marked with my new blood type. As engraftment from the donor cells occurs I now have a new blood also donated by my sharp German boy (I always think of him like that). My blood type is now O positive. I also have the blood DNA of a young male. I still haven’t eaten bratwurst but Jeffrey is holding out hope.
Today song of the day is:
Is it possible that I’m getting better? The doctors say that I am. The nurses say that I’m doing great. But I don’t feel it yet. The doctors say that my counts are taking longer than expected to graft but he’s not concerned. He says it always grafts. They are looking at neutrophil count now. On Thursday it was 0 , on Friday it was 250 and today it was 270. Very promising! I’m still so tired. I made myself get up at around 2:00 pm to take a shower and I sat in my chair for a couple hours until I was falling asleep and I climbed back into my bed where I have been until now. Actually getting dressed took until I was back in bed. Its so much work to do basic tasks. Now that my mouth sores are mostly gone the docs and nurses are back to giving me the food lectures. The nurses have just played their nightly game of “What can we get Lauren to eat?” This game ended with an agreement to eat cottage cheese and a Gatorade. The nurse that came up with that idea ran cheering down the halls.
My abscess is doing better. It’s not gone. I might have to do surgery after my counts have improved. The head doctor is thinking about sending in a surgeon now. He says that sometimes surgery has to be done even with low counts. I’m off of narcotic medication and most of the hallucinations have stopped too. I think the staff was entertained with my hallucinations. I heard church bells one time when two nurses were in. They look at me curiously but didn’t restrict me. The thing that got me restrictions was a middle of the night incident. My IV pole fell over and was laying on the ground. I didn’t wake up. Several nurses came in and asked me what happened. I said I didn’t know but I might have been the cat. I got put back on bed alarm.
It has been relatively uneventful around here. Jeffrey is sick and home with sick kids so I have been alone a lot. Several other regular visitors have been home with coughs too. It sucks that I have no white blood cells in winter and a terrible flu season. It’s okay, I’m not quite up to visitors other than ones who can just watch me sleep.
I hope I get some hair in before this style is completely dated. We are doing this haircut!