Monthly Archives: January 2013
K+ 4.3 Good!
Mag 1.5 Not Good! got IV supplement today
WBC .4 showing significant progress but still Not Good!
HGB 8.5 going down and will need a blood transfusion tomorrow
PTS 29 pretty shitty number but for a leukemia person this is Not Bad! Will need another transfusion tomorrow.
This is a summary of the last 4-5 days. Before today I was not capable of writing because the morphine drip makes me crazy. Like, there is a cat in my hospital room crazy. Also, had I tried to write a couple days ago it would have been just lines of random swear words. My friends who now hate me were lucky enough to be on my drunk texting list.
For the 4th day in a row I woke up in agony, both trembling and sweating. I had hoped that after I started the morphine drip I would be better. I avoid morphine because it makes me hallucinate. Not just the cat thing. I see and hear things that are not there. I startle when waking sometimes kicking or hitting whatever (or whomever) is close to me. I have a bruise on my foot and hand from this. I’m also loopy and woozy getting up to go to the bathroom so yesterday and today I’ve been an assist for mobilization with an alarm on my bed that goes off if I get up. I HATE this! You gave to call for help every time you have to go to the bathroom. If I want to walk across the room to hang up my bathrobe I have to get someone to help. It’s annoying and dehumanizing. Staying independent on most things that I have to do helps me feel more like a person. It’s hard to stay independent on morphine or if you are in excruciating pain.
The reason I’m having this pain is the chemo and radiation side effect called mucositis. This includes mouth sore but it’s really more described by saying its inflammation of mucos membranes. This causes the mouth, throat and all the way through the digestive track to become inflamed and extremely painful. My extremely painful areas are my throat and “all the way down the digestive track”. You get I’m saying? Of course you don’t because what I have is absolutely more terrifying than you can imagine. You probably shouldn’t read any more of this paragraph. What I have to say is TMI and ugly but if you are still reading it means you care more about me OR you are just super curious after my lead in. Here goes: I have an anal abscess. It started with mucositis in my digestive system including my rectum (gross, rectum!). I was in the bathroom going potty and I had a screaming, white light, shaking and sweating pain starting at the pooper and radiating down the legs. I had to call the nurse on my beep phone about the pain and he checked but since he didn’t see anything he brought me some perineal ice packs (genius for a dude!) and upped my pain medication before calling my doctor. The doctors on their first talk of it thought mucositis but the second time they saw me just out of the bathroom and the condition was given more attention. The doctors ( all three of them simultaneously) used an otoscope as flashlight to look in my butt. My nurse ran to my other side and grabbed my hand “in case I needed something to squeeze.” as the tiny Asian doctor slid her finger into my ass. Oh no, that just sounded really porny. By the time I got my pants back on the doctors had decided that it is an abscess. I was still shaking from the pain.
The treatment for an abscess is to lance and drain it. The hematologists say they can consult in a surgeon but there is no one who will touch me with these blood counts. I remember cardio wanted my platelets up to 100. That’s not going to happen anytime soon. So, I will have to deal with it for awhile. I was given high dose IV antibiotics and I feel slightly better today. I’m sure the constant morphine administration has helped with me feeling better.
After the doctors saw me and i was just in my room I spiked a fever. They had to draw blood cultures from my arm and from my central line. Result of those takes days. Then I had to start another antibiotic that they give to people with a fever of unknown origins. The docs had said that as a patient becomes and stays neutropenic they can spike a fever for no reason. It’s because we have no white blood cells.
This is my current IV cart. It is crazy heavy with 3 med pumpers and currently 8 bags of fluids and medication.
Operator: How may I help you?
Me: Hi, Yes, My nose is bleeding and I need pain medication.
Operator: So, would you like me to send your nurse?
Me: yes, please, that would be great.
My WBC count has not started to come up yet. It’s teetering between .1 and .2. This is all to be expected. Tomorrow (Thursday) will be the first day that they will start looking for counts to go up. I got a transfusion of platelets this morning because 4 is the lowest I’ve ever been. I had to have supervision for my shower because of risks with the low platelets.
I’m still having the mucositis in my mouth and throat. I’m off my isolation since my viral test was negative. They take it seriously because the guy next to me tested positive for the flu. I’ve been doing my oral care so it’s worse in my throat and esophagus. I have some acid reflux due to inflamed tissues all the way down to my stomach. I have Magic Mouthwash which is a combo of antibacterial, anti fungal and lidocaine. It is pink and tastes like a combo of Peptol Bismal and cough syrup and it make my mouth and throat numb for about 20 minutes. I’m also still getting oxycodone every 3 hours with a shot of IV Morphine for breakthrough pain. The doctor offered to put me on a Morphine clicker so I can control the dose all day. I don’t think we are there yet. I also have to deal with the side effect of itching from the opiates. I have to take Atarax as an antihistamine to help with itching.
Obviously, the pain makes eating and drinking difficult. I have Popsicles and ice cream. Today I had a little cup of beef vegetable soup. My nurse last night made me a milkshake with a shot of vodka in it except the vodka was really Ensure. I drank about a quarter of it. Carnation instant breakfast tastes better than Ensure. I am starting to get a little appetite back so when the mucositis clears maybe I can eat. The nutritionist came in to check me today. They get red flag alert for patients that don’t eat and come to the room to try to find something for us to eat. She told me that I’d do well if I could get down two Ensures a day. Yum!
The doctors are still waiting for me to get diarrhea and a fever. They ask me everyday. Pretty much no one gets out of here without fevering and having diarrhea.
I still have been meeting all of my goals. The eating could be better but I’m at least getting a little bit. I walked 10 laps around the unit last night and I get a shower everyday. I’m using a shower chair but that’s okay. It takes so much energy to do these normal things. There are so many steps involved with showering that I’m exhausted by the time I get to my full body rub down with Eucerin cream and put my fresh clothes on. Today I’m wearing a t-shirt and boxer shorts because Jeffrey has been taking care of a work emergency then a sick Amira and hasn’t been able to bring me my laundry. I suppose I could wear a hospital gown but they are so depressing. A friend is picking up and bringing me my laundry today. Jeffrey is taking Amira to the doctor because she has a lingering cough and fever from a cold. Once the family is well they can come visit me. I want so much to be home and to be able to take my daughter to the doctor. Jeffrey is fully capable and is doing an excellent job with the kids and keeping his time balanced but I just want to be there and take care of stuff for my family.
My card wall is growing steadily and the secretary makes comments about me being popular when she brings my mail. I love to read all my cards and then tape them to the wall. Most are hilarious and make me laugh. Some are sappy and make me cry but I decided that it’s good to cry. All of the cards are encouraging and I look forward to my blood counts going up and starting to talk about the possibility of going home.
Beautiful plaque sent to me from my friend in Colorado:
Life isn’t about waiting for the storm to pass it is about learning to dance in the rain.
Mucositis is worse but the doc increased pain meds. I’m trying to eat some chili that my nurse, Stephanie, got me from Wendy’s
Today, my friend Ann from down the hall is taking her husband home following his stem cell transplant. He had a reduced intensity transplant and was here just 3 weeks and is doing well.
Last night when I was walking laps with Jeffrey we stopped and chatted with Ann. She has been encouraging to me and has checked on me daily. I have been very sick at times and sometimes she would just hold my hand and tell me that she is here. I noticed her necklace with an angel on it. She told me she got the piece in the hospital gift shop. Its a metal emblem made to hold and rub between your fingers. She had her jeweler at home drill a hole in it and put it on a chain for her.
She came into my room this morning before I was up to tell me goodbye for now and she put this necklace around my neck. She told me that she got herself another one already. I feel touched by her attention and affection.
This morning I woke up with nasal congestion with bloody snot and a white hot burning throat and an earache. I usually sleep until 8:00 am so my nurse hadn’t been in to check on me. It was 7:30 when I pushed the call button. Larry was my nurse for the day and he came in and checked my temperature (normal) looked in my mouth and got nasal spray for my sinuses. He also got the doctor who hadn’t started rounds yet. The resident came in and did a full exam. She could not rule out the flu or a cold so ordered a virus test and I went on isolation and droplet precaution waiting on the results. This means that anyone who comes in my room has to wear gloves, a gown and a mask with eye shield. It’s super annoying but necessary to protect other patients just in case I have something contagious.
The doctors came back through on rounds. Dr. Devine is on rotation now. Apparently he’s a big deal around here. He is the very head of the transplant department here at OSU James. He examined me and said that nine times out of ten the sore throat is esophageal mucositis. He said my blood counts are as low as they can go and they would expect me to feel sick. I’m right where the doctors think I should be and everything is going as expected. They are being positive but I still feel like shit most of the time. The mornings are worse and I’m sluggish until about 2:00 pm. They tell me it could be a lot worse. I’m not out of the woods yet.
I have almost completed 5 days post transplant. Here are today’s stats:
My HCB (hemoglobin) has been unbelievably high since my transplant. Before I got the cells I was 7.4. They will give me a transfusion at anything under 7. Since the transplant I have been 10 and 11. My super German boy must have crazy good red blood cells.
Today I got an IV bag of each K+ (potassium) and Magnesium. The doc originally ordered a pill but my nurse Larry told him that I would refuse to take the pill (I do) and he might as well rewrite the order. Potassium pills are HUGE grainy uncoated things and if you break them in half they are still big and now have a rough jagged edge. I take all my other pills fine but I have choked on these so many times that I refuse especially since 3.6 isn’t THAT low. Besides, I have these three lines hanging out of my chest for a reason so please go ahead and give me my electrolytes via IV.
Today I also got a transfusion of platelets. This bumped my number from 11 to 49. It wasnenough of a bump to stop my nosebleed. Just to keep it in perspective normal people have at least a blood count of 400 platelets.
The number that is most telling of my current condition and the blood count that cannot be corrected with a transfusion is the WBC or white blood cell count. I’m currently at .1. This is the lowest possible number that a WBC can be and it means that I’m at my nadir (lowest point). So what happens from here? Well, hopefully I go up. It can’t go any lower but I will likely stay at this lowest number for 2-3 days. The risks at this point are fevers and infection. Dr. Devine today told me that my new cells are currently trying to take hold. He said the bone marrow is like the soil and and the stem cells are like seeds. They have to find a cozy place to plant themselves and then grow and mature before being useful for my body.
Here is Jeffrey all suited up for droplet precaution and isolation in my room. He wears shorts to the hospital because I keep my room thermostat at 77. No one dares to question me on this.
Jon came by the other day and painted my toenails. My feet are swollen from IV fluids but the little pedi made me feel better.
I have almost made it through Day +3. Each day is a struggle and I have gone back to taking things one hour at a time because even one day at a time is overwhelming.
From now on if anyone wants to complain to me about how tired they are be prepared to tell me your white blood cell and platelet number. Without these numbers I will not know if you are just regular person tired or cancer tired. I’ve learned there is a difference. Cancer tired means fatigue so deep that sleeping for 12 hours a night does nothing to touch it. Laying curled up in a ball under the covers you still need more. A deeper sleep, more relaxation until you no longer feel the pain in your bones. You feel empty and spent with no end in site. The doctor says that I’m exactly where I need to be. He pats my leg and ask me if there is anything he can do for me. I ask when I can go home and he laughs and says its too soon to ask that question. I ask him when I will start to feel better and he gives me a look and says we’ve already talked about that. My blood counts have to plummet some more and then they give me drugs that keep them down to give the new marrow a chance to graft before the impending GVHD hits. Sometime around day 20 I might start feeling better.
I haven’t written about the actual transplant yet because it was mostly a drug induced blur to me in that day and days following. The day of the 14th I knew my German boy was having surgery but I thought it would be late on the 15 th before I would get the cells. I spent the day fighting a migraine and resting since it was my rest day. Victoria came over and we laid in my hospital bed with the iPad propped on my meal tray and plugged into my IV pole (we improvise well) to watch the season premiere of Girls on HBO GO (thanks B!). I was falling asleep during even though the show was hilarious and feeling a headache creeping on. By the time Victoria left it was a full blown vomiting migraine. There is speculation about what is causing my headaches but I have been receiving IV Zofran for nausea and a side effect of that is headaches and a side effect of my headaches is vomiting. So, nix the zofran.
The head nurse came in and introduced herself nervously while I was busy dry heaving into a bucket. She said there was a mistake and no one had let me know that I would be receiving my transplant cells within a few hours. The day nurse didn’t know that it would be happening but the night nurse found out and had a small panic attack and called the doctor. She let me know that I could call people to come be with me for the new cells. I thought that I would just be doing it on my own since Jeffrey was home with the kids. The nurse gave me IV pain and nausea meds to try to get on top of the migraine since at this point I was way more concerned about how bad I felt than talking to doctors. I managed to send a quick text to Jeffrey that my cells have made it to the US and would be to the James by 2:00 and going into me by 3:00 am. Then I laid face down on the bed waiting for my hell to end.
I felt a gentle rubbing of a hand on my arm and when I looked up it was Dr. Benson. It was close to 11:00 pm at this point and I had already seen him earlier that day and he was wearing different clothes so I knew he had come back to see me. I joked that shouldn’t he be home trying to get his boys in bed and he said that he wanted to come back in to talk to me about the transplant himself so that I didn’t have to hear it all from the on call doctor that I don’t know. Such a sweet man! I don’t remember specifically what was said in our conversation because I was fairly high at this point but I do remember that he told me that my donor cells had made it across the ocean and were just leaving on a flight from DC to Columbus. It would take one hour for the James to process the cells and get them to me. I asked Dr Benson if he had a flight tracking app for following the bone marrow to its destination kinda like the Santa tracker. He said no but thought it was a great idea. He left to go do final preparations for the transplant and the nurse came in to give me my pre-meds. I was already high and then I got hit with IV Benedryl and Tylenol. I felt my eyes roll back in my head just as Jeffrey came in and plopped himself in the recliner. I don’t think I even got to have a conversation with him because I was snowed. Thankfully, his mom came to watch the kids overnight so that he can be with me for the transplant. Unfortunately, that meant that he got no sleep that night And stayed with me the next day since I was still out of it and felt hungover from meds and woozy and weak.
The actual event was anticlimactic compared to the preparation and excitement. I saw the bag of cells but didn’t get a picture because I was so out of it. It was a huge bulging bag of thick red fluid. I was told it contained three times the amount of cells that I would need for a successful transplant. My donor went through surgery to remove the cells from his hipbones and they got a very large amount. This article explains the donation process in case you’ve missed it before. As far as my part of actually receiving the cells it was as simple as a blood transfusion. The IV bag was connected to my central line and the cells flowed in over three hours. They try to get them in as fast as possible but my blood pressure was dropping low so they had to slow the drip. The nurse needed to stay with me for the entire time taking vitals signs (BP, heart rate, body temp and oxygen saturation) every 15 minutes. The transfusion was done by 6:00 am and by the time I woke up I felt like I had been hit by a truck. The doctors told me that it was a rest day and I stayed in bed letting Jeffrey answer texts and phone calls.
This is my theme song for the transplant:
Dancing on my Own
Robyn – from Girls Volume 1 Soundtrack
I’m at day +1 which means the day after transplant. I’m still feeling crappy most of the time and haven’t been real chatty so I thought do a post of pictures of things in my room that make me feel happy and supported even when I’m hiding from the world under the covers.
The cards that I have received from friends and family. They are mostly funny and make me laugh but always are encouraging and make me feel loved.
Hospital chair with a donated purple chenille afghan and a pillow I bought using a gift card from my dad.
My friend neighbor “angel” Ann who is here with her husband brought me a sandwich from Jimmy Johns. She must have heard that I haven’t been eating and they have been threatening with tube feeding. I ate half the sandwich and it was delicious.
My friend Amy brought a lovely picture frame to put on my side table and Jon added two flameless candles. The ambiance in here is spectacular.
I had two days of eating just rice with butter and it was reminiscent of my first hospitalization when that is all I could tolerate.
This chart shows my essential blood numbers over the last 3 days. Day -1 is the day before transplant. Day 0 is the day of transplant. I had a big spike in hemoglobin with the transplant. I’m picturing the burly German boy who is definitely still in pain and probably hates me from the huge amount of cells that were extracted for me. Thanks Dude, I owe you a beer.
This is Jeffrey posting an update for folks.
The bone marrow transplant is complete. It happened earlier than expected at 3am this morning. It was complete by 6am. Lauren slept through most of it though a nurse stays in the room the whole time checking vitals every 15 minutes.
Today Lauren feels sick and woozy, but medically her vitals are looking fine. I spoke to the doctor earlier and he said she would start to feel better tomorrow. She will get a few days of feeling “decent” (I suspect that is a relative term) and then the grafting will start happening and her counts will finally start to come up. She does get a couple of low dose chemo days during this time, but he said it was low enough doses there aren’t typically side effects.
So for the most part we still take it day by day until the counts start to come up and see what surprises GVHD will have in store for us. GVHD is a mixed bag, we want some effects as that means things are working, but we don’t want it so severe that Lauren is miserable.
Thanks for all of the good thoughts being sent our way!
I stayed in bed until 2:00 pm today with the exception of mandatory bathroom breaks as prompted by my long suffering nurse Dave. Finally, at 2:00 I turned on my Girls Volume 1 Soundtrack for motivation to walk around the floor and stop by the kitchen. I was wearing my super cute pink leopard print pajamas with matching slippers. Only thing that sounded remotely appetizing was Macaroni and Cheese. It was probably a bad choice. I was 4 bites in when I had uncontrollable explosive diarrhea. I had to call Dave and take a shower. No fun for anyone involved but he’s said he’s seen it all. I might try some toast next. I am finished with all my chemo and radiation. There are side effects galore and the nicest BMT doctor, Dr Benson, pats my shoulder and assures me that today will be a better day.
That one incident did accomplish all of my goals for the day and now I’m beat and back in bed.
View of Campus out of my window
A little walk outside on a 52 degree day in January.
My words are coming slower with more pauses In-between. I may have to have people speak for me as I drift farther into never land. The place were we never grow old and die. The place where I ignore all the monitors and beeping machines with noxious liquid drips. I have about a week to go with the really horrible stuff then we are just waiting for my new marrow to graft.
I have completed my radiation treatments. They were miserable. I had to strip down every morning and afternoon on a cold table. The technicians would arrange my body and stick tape to hold diodes in place. They would often rip this tape off forgetting that there is fragile skin underneath. I’m going to need a lot of tattoos to cover these scars. You have to hold still in one position for so long that your bones ache and you have to pee desperately but a break to go potty would mean starting over again. My side effects from this is nausea and fatigue and my skin is tanned and sunburned. They told me that wouldn’t happen but I’m guessing they didn’t take I to account my super fair skin.
Today I have my second dose of ATG ( aka Shake and Bake). They don’t tell this to the patients but I figured it out because I’m smart like that. It means that this drug brings on fever and rigors ( shaking). The purpose of it is to reduce the effects of graft versus host disease (GVHD) which can be brutal and it the biggest risk factor for me. I also had my first high dose of cytoxine chemo drug. This will drip in slowing over the next 48 hours bring my awareness and sociability down with it. I will likely sleep between bouts of nausea and nurses waking me eat something and go pee. With this drug I have to pee at least 300 cc of urine every 2 hours or I have to take Lasix. It probably wouldn’t hurt too much since I’ve put on about 10 lbs of water weight since being here. I’ve had cytoxine before but at a lower dose and it still knocked me on my ass.
Goals for today: I ate 3 bites of cereal for breakfast, took my pills (other than the ones I argued with the nurse about) then sleep till noon. At noon I woke up enough to drink a Boost Breeze wild berry ( not peach, those are horrid) and I considered that my lunch but a food pushing nurse talked me into a small bag of pretzels. Afternoon snack the same nurse made me a chocolate milkshake and I drank some of it. Dinner again was Boost Breeze. They go down easy and are high calorie with nutrients and protein. I don’t know how they get protein in a clear liquid. I’m sure there are lots of chemicals involved.
Exercise: nil I’m attached to the bed with heart rate monitors and IV tubes. I might work up some energy to do some leg lifts in bed. The nurses are looking for a portable heart rate monitor so that I can get up and walk around some. That would keep my PT (Kyle) happy
Shower: I took a shower independently first thing getting up this morning. I slept from 8:00pm to 8:00 am with interruptions during the night for vitals and pills. I wanted to stay in bed but I got up and showered anyway because the ATG makes me sweaty. It could also be because I heat my room to 80 degrees.
I have been listening to my Pandora station titled folk music with a strong female lead (thumbs down on the Taylor Swift) and yes, John Mayer shows up in this list and he totally gets a thumbs up. I’m including a music video that portrays the emotions that I cannot show right now.
The radiatin treatments began yesterday at 6:00 am. I was woken at 5:15 to take my pre-meds. I didn’t fall asleep until 1:00 the night before and I was also awake for meds at 3:00. So far I have had 3 treatments with three more to go. I am halfway through my prepaid tanning appointments. I slept all morning after my treatment and people were starting to get worried but I just needed the rest.
So, what does it feel like to lay under a minor nuclear reaction? Radiation takes 2 hours because they used a block to shield my lungs. Little metal replica of my lungs were made from x-rays. These were hung on a clear screen halfway between the light and me. Placement and size needs to be precise. A physicist was there to ensure accuracy. He looked exactly like what a university physicist would look like. Tallish, neat beard, bow tie, sweater vest, nice herringbone slacks that are an unfortunate 1 inch too short. I wore my shorts and nothing else while I froze on the table during treatment. I am connected by wires and diodes running everywhere and it takes quite some time to get them . I don’t feel anything during other than discomfort from holding the same position for so long.
Back In my room I was starting to feel queasy and headachy but was able to eat and take a shower before collapsing in bed with a massive vomiting migraine. The nurse reminded me that after showers I have to use Sage cloths to wipe down my whole body. I know they sound herbal and soothing and natural but they are not!
They are SAGE brand thick paper cloths soaked in chlorhexidine
You use these after you shower to remove any remaining bacteria or fungus. These burn! Even after they dried I felt like I needed to claw my skin off. The transplant doctor was in and said that I can probably skip them because my skin is already so irritated from the Kepivance and radiation. My skin is red like a sunburn and swollen and puffy in some areas and tender to the touch. We are doing a patch test in the morning on my inner arm to see if it’s an allergic reaction to the chlorhexidine. I have prescription Eucerin cream which is calming to my skin and a nice male nurse rubbed it on my back for me. Jeffrey hates lotion so I knew better than to ask him to do it. Cool washcloths and Eucerin cream seems like enough although I have to get up early to wash it off before my radiation treatments in the morning. I was told greasy lotions on my skin during treatment would be like wearing Cisco to lay out in the sun. That would be a good description of how I feel after treatments. I feel like I passed out on the beach in Mexico after drinking too much tequila.
I have been successfully completing my one goal of 4 times daily oral care. I know the bathroom is right next to me and I have nothing better to do but it takes a lot of effort to get up and go through the process. I have to use sterile water from a bottle sort of camping style for brushing and rinsing my mouth and toothbrush. My platelets are too low to use floss but we use Biotene mouthwash after brushing. I’m doing what I’m told in order to prevent mouth sores.
Yesterday I ate: 1 serving honey nut Cheerios, Gatorade, a cherry Popsicle, Wild Berry boost and Pirate’s Booty for a snack. The red popsicle and boost juice freaked out the nurse when it came up bright red. It looked like blood was a possibility so she was relieved when I showed her all that I had eaten.
Today so far I’ve eaten one hard boiled egg, 1/4 of a bagel, apple juice, 1/2 piece of bread with peanut butter and a Gatorade. I’m trying for more protein for healing ability.
Exercises yesterday: 15 minutes exercise bike, walks around the halls, a few leg stretches in bed.
Exercise today: walking to kitchen to get my own food, 15 minutes exercise bike and elastic strap for arm exercises.
X marks the spot for radiation. My body is covered in sharpie X’s and graffiti. I also got a new central line that had 3 lumens. It’s an upgrade from my old one.