Here is the view from my room while we wait wait wait.
Monthly Archives: June 2012
I’ve continued to feel shitty over the last couple of days. My tachycardia is worse. I hit 170 beats per minute just brushing my teeth. The cardiologist examined me today and while I have a mild to moderate amount of pericardia effusion he does not feel it needs to be drained over the weekend because it may not even be the cause of the problem. Meanwhile, bed rest for me and it’s starting to wear me down.
Other issue is my spinal headache following Tuesday’s lumbar puncture. I finally got to see an anesthesiologist today about a blood patch. He said I have a classic spinal headache but he’s not going to do anything about it. He said of the 80 anesthesiologists in the hospital none of them would touch me with a blood patch. The reason for this is because my platelets are too low and there is a risk of introducing leukemia cells into the CNS. He said I’ll just have to wait out the headache. He said he’s never seen it last more than 2 weeks.
Tomorrow is another visit with the cardiologist and also an endocrinologist to try to figure out my tachycardia. It’s so frustrating to feel so sick all the time and not have answers.
In the meantime I have started trying on various alternative head wear. One of the PCAs told me that my floral scarf and big hoop earrings make me look like a pirate. He went to find me an eyepatch. And then he made me a hook hand. Argh!!
My heart is still not doing well. My heart rate continues into the 170s when standing. EKG was normal, x-ray was normal so now I’m being sent to the Ross hospital for chest CT with contrast to look for a pulmonary embolism. The doctors really have no idea what is wrong so they are ruling things out. I’d like to be able to go for walks again and shower alone.
Docs say the chemo is working but we need to figure out the heart things. We also got word today that my central nervous system is apparently frees from leukemia cells. If this conintues to hold true then I won’t have to have chemo injected into my spinal fluid again and I may be able to skip the cranial radiation.
My rough day started yesterday after noon with the lumbar puncture. They procedure itself way fine but I ended up with a massive headache that radiated down my shoulders and back. I also was getting dizzy when standing and vomiting. So, back to more bed rest. Its okay though because I’m too tired for anything else. The nausea medicine makes me sleepy. The headache medicine make me nauseous so I end up in a big cycle of trying to manage symptoms. I’ve been sleeping most of the day. My eyes can’t focus on books week right so they called in a ophthalmologist. There is nobleeding behind retina so the problem s focusing is more likely to be dilated eyes to to another med.
This is not my lowest point after the chemo. I still have another week before that hits so I’m hoping for a few better days before it really hits.
Yesterday we did the big haircut. Several people have joined me I shaving their heads and that means a lot to me. I have packaged my hair up to be sent to Florida and I will son have a hairpiece with my own hair.
I want to send a special thank you to those who donated money for the wig fund and also a huge thank you to those of you who have watched our kids for up while we are at the hospital.
Here are a couple of my buddies with their shaved heads. 😉 more later
As the chemo begins to set in on day 7 I am suddenly exhausted. It’s not quite debilitating yet but I know that is coming. I regularly need nausea meds to eat a little meal and take all my meds. This is all to be expected for this point in my treatment and they will expect to see good days and bad days. It’s already time for more chemo tomorrow. I’ve gotta keep moving on.
I’ve continued to have problems with my orthostatic status. My heart rate continues to beat at an excessively high rate even at rest but increases upon standing. I’m wearing a heart rate monitor 24 hours a day now. This is fun because if I get up to go to the bathroom my heart rate will jump to 165+. The doctors don’t come in until it’s over 170 but even they don’t know what to do. x-ray is normal, EKGs are normal, they have tried putting back in all the fluids that were removed. Today they tried a double dose of a blood and platelet transfusion. My heart rate still goes up and my blood pressure bottoms out. Today they decided to test for infection. They took two blood cultures, one from my central line and one from my arm. I haven’t had a fever but they want to try to rule out any possible cause of these symptoms. The worst thing for me is that now any bit of autonomy or independence that I had is gone. I need to ask for assistance to get up to go to the bathroom and brush my teeth. If I take too long the nurses rush in telling me to sit down. I have become completely passive about my care. I’m here in the room and they are here to help me but I have no control over what is happening to me. I take my pills and I let them test me and inject me. I am disconnected from real life.
I am taking back what little control I have over one area. I am having my hair cut tomorrow before it starts falling out. I’m so thankful to the generosity of friends and family who have contributed to my wig fund. I have enough money to send my hair out to be made into a hair piece to be worn under hats. I’m going to need to acquire a full wig at some point and expand on my pitiful hat and scarf collection but this is a wonderful gift. Jon will cut my hair as directed (And he will NOT cry) and I won’t cry either and we will mail it in a ziploc bag to Florida where it will be hand sewn into a perfect hair piece just for me. Since I want to salvage as much of the length as possible we will be cutting it straight to the scalp. I’m not doing the thing where I pretend to like a short pixie cut. We are going GI Jane straight away. Jon and Jeff will be buzzing their heads also. Who else is in? Orange leukemia ribbons for anyone who participates.
This weekend I was looking forward to seeing the kids but this room is no place for children. I’m not sure how all of us can go through this and not come out deeply affected. I fear that even if I survive this my family may have nothing left. I have some pictures that include fun things to do around the hospital and there were moments and snippets of glee but the rest was strained and tiring. The kids need both of their parents but I have to stay here. Xander says he just wants everything to go back to normal. Amira is thrilled to have so many new friends to play with and things to do. Overall, I think they are hanging in okay.
Foot race outside in the courtyard.
Sunday they took me for a walk outside by the fountains. I had some medical issues come up and needed some tests that pushed our walk back enough that they missed their movie.
I got my fourth chemo medication yesterday evening. This one is given alone because of a high risk of allergic reaction. I was given Benadryl and Ativan for pre-meds so I really just slept through the infusion and I think there was a visitor? In spite of this the party room was still able to entertain for movie night. We got pizza and a second dose of Ativan cut my nausea enough that I was able to eat some. I don’t remember what the movie was but the pizza and company was good!
My other issue is that I have been labelled orthostatic. This is measured by taking my heart rate and blood pressure while laying down, again while sitting and again while standing. I failed this test in the morning and evening yesterday. My blood pressure is plummeting upon sitting and standing while my heart rate is increasing. The nurses didn’t believe my heart rate went as high as it did so they redid it manually. Because of this I can’t get up without an assist. This is frustrating because sometimes I just want my Chapstick but its across the room and I don’t want to page someone to come in. They are super nice and don’t mind but it bothers me. Jeffrey was able to stay the night last night which was helpful because some awesome friends took both kids for a sleepover.
I feel better this morning than yesterday. My EKG was normal and my lungs are clear so the explanation I’m given is that I lost too much fluid in a 24 hour time frame. Their solution? Pump me back full of fluids. That sucks because I was really enjoying the flat stomach that I came in with instead of the dreaded steroid bloat. But, if it lets me walk again that is good. Today we are planning to take a walk outside but I will need to use a wheel chair and a mask of course. When we get back I will be getting a full transfusion of A+ because my hemoglobin is low. Other than that it is Saturday and I’m looking forward to having visitors. Hopefully I don’t fall asleep on them.
One of my favorite visitors.
I posted this quote on my Facebook wall while we were still in the phase of figuring out what was wrong with me but we had been told cancer of some kind. I still can’t read it without tears in my eyes. I have people telling me that I’m strong and that I can fight this and while I think that’s an encouraging thing to say I’m just struck by how much of my cancers have nothing to do with anything I’ve done. You can fight and fight hard but not make it and does that make you less of a survivor? Succeeding to me is to keep putting one foot in front of the other and doing the next thing.
“Cancer is not a battle that we win or lose. It is not our fault or a
sign of weakness. We are not responsible for our cancer outcomes. The
crapshoot of cancer and recurrence can NOT be controlled. Celebrate
yourself for each time you, despite all the trauma of cancer,
treatment, and the mindfuck of “survivorship”, choose to love, live,
lust, laugh… We are not a success story based on our cancer
progression or not. We succeed when we are courageous enough to keep
walking forward even with missing parts, severe pain, addled brains,
and broken hearts.” Dr. Erica D. Bernsteing
This is a cancer. Bracelet given to me by a friend. Each color represents a different type of cancer. luekemia is orange.
This morning I showered and got ready for my day just like normal. This includes most of my normal routines because it makes me feel less like a sick person. The oncology fellow came in and laughed at me for unplugging my IV to plug in my flat iron. I had several morning visitors so I wanted to do my hair. We talked a bit about the hair loss. It will definitely be falling out in 14 days but could start as soon as 7 days. I’ve been thinking some about cranial prosthesis (wigs) and considering the length of my chemo treatment schedule (2 years 4 months) I’m going to need several options. Xander has specifically requested not to see mom with a bald head. I really like my hair and it makes me sad to lose it so I’ve been looking at a company in Florida Hats with Hair who will turn your hair into a wig like thing that doesn’t have hair on top and you wear it under a hat or scarf. I could get cheaper underhair but there is something comforting to be able to use my own hair. My amazing friend Jon practiced tying a scarf with me last night and he’s come up with a plan to do the side tie scarf and giant earrings thing.
It was suggested that I start an account for a wig fund and as annoying as I find ebegging to be I thought I could make it available for those who have asked what they can do or what I need. I will be using my PayPal account firstname.lastname@example.org for my wig fund.
In other news the, and I probably should have mentioned this before whining about my hair, chemo is already working. One obvious side effect was that I now piss red acid. Xander thinks this is awesome and has compared me to his acid breathing black dragon. Speaking of pee, since I’m crazy bloated I was given meds in my IV that made me lose 3 lbs in an hour via my urinary tract. Weird. I was also tired today and spent more time in bed than I have been. I am afraid because I know it will get much worse.
Besides the side effects at less than 24 hours post chemo my enlarged lymph nodes were already reducing in size and my white blood cell count dropped significantly. So much so that they considered redrawing and testing again. We just took it as a good sign. Good news is hard to come by so we are happy.
Victoria took me for a walk outside this evening. I needed to stop and rest but we made it to the statue. Our long term goal is to be able to walk to the bar on Neil Ave. if we have to we are taking a wheel chair.
No makeup, tired eyes but hair done!
The insurance called this morning and approved my clinical trial. I have officially finished getting my first dose of chemo. I received 3 different medicines. The nurse practitioner came in to do my lumbar puncture to test my spinal fluid for cancer cells. I had visiting guests which was great since Jeffrey was not going to stay for this. These ladies could take it. The procedure was fine. Some pain and burning with the numbing shot and she touched a nerve once but I screamed and jumped which made everyone else in the room jump and then laugh at me. That’s right, they laughed at the chic with a needle in her back. While the needle was still in she administered my first chemo medication directly into my spinal fluid. The hope is that my spinal fluid does not show signs of cancer and this one treatment will be enough to keep it away.
After this I had to lay down flat for 1 hour to let the meds distribute and make sure I don’t get a headache from the spinal. The nurse hung my other two chemo medications. An hour later they were all in. The only thing that feels different is the pain I have in my mid-back from laying on this hospital bed all day. I feel fine. The nurses say I will feel shitty in 7 days.
This is a picture that Xander drew one day in my room. It represents his understanding of what is happening. He said the first square has a flower with a lot of weeds. The second square has the flower and weeds being sprayed with weed killer. The last square shows just a flower. He says the flower is mom and the weeds are the cancer. The weed killer is the medicine that kills the weeds/cancer. In the end the flower is free from all the weeds.
While we continue to wait I will share some of my new vocabulary words.
Petechaie – When platelets are low in the blood capillaries burst on the surface of the skin leaving red spots.
Tumor Lysis – Leukemia cells are rapidly dividing and spilling contents into the blood. This causes a change in the chemicals in blood which could cause damage to organs.
Neutropenic – immune system is suppressed even though white blood cell count is high. This is because the white blood cells are young and not fully functioning.
Nadir – This is the low point that occurs about 7-10 days after chemo when the bone marrow is wiped out for about 2-3 weeks. Bone marrow regenerates hopefully without the leukemia.
I am currently neutropenic which is why I have dietary and lifestyle restrictions. I’m on a low-bac diet. I cannot eat fresh fruits or vegetables or salad except for what comes from the hospital’s special sterile kitchen. I cannot have outside unsealed drinks or ice. I can only have sterile ice and water or unopened containers. No deli meat or sushi or anything with a chance of carrying bacteria.
I also can’t use a toothbrush for fear of mouth sores. I’m given sponge toothettes and biotene mouthwash. I can’t clip my nails or use razors. I was given permission to use an electric razor but then I somehow cut myself so that’s out. I also was scolded for putting on eyeliner because it could introduce bacteria. The doctor said if I must I can use a new eyeliner and dip it in alcohol. Of course, I said that I must.
Hopefully tomorrow will bring good news on the insurance/clinical trial quibble. We could really use some good news.
Here’s a pic of when Amira took me outside for a walk. I was allowed to be unhooked from the IV for 60 minutes but still had to wear a mask. I’m already bloated from the fluids they pump into me constantly. We still had fun.
The doctors have determined that a chemo regimen from a clinical trial is the best treatment for my case based on age and presentation. This trial is not a standard treatment yet but shows promising results. For standard treatment any person between the ages of 18-80ish are given the adult chemo schedule and under 18 are given the children’s treatment. Doctors have found that ALL in children is highly curable and in adults not so much. This is for a variety of reasons. Adults are more likely to have underlying conditions and be in poorer health etc and respond differently to treatment. The clinical trial that has been chosen for me uses the children’s treatment protocol to treat young adults with ALL.
The plan was to start treatment on Friday, however, we are awaiting insurance approval. One reason for the wait is that the treatment is considered a clinical trial. Apparently with clinical trials, insurance does not usually approve immediately. Obviously this is frustrating for doctors and patients who would prefer starting treatment as soon as possible but also don’t want to be stuck with a huge bill if insurance doesn’t start. Doctor says he will says he will fight like hell to get approval to start chemo as soon as the insurance office opens for the week. He said he considered sending me home for the weekend but decided against it since I have small children and I would need monitoring of my blood and meds to keep me stable.
Chemo treatment will consist of 4 different scheduled chemo meds that are given in my hospital room with alternating spinal taps (suck) and bone marrow biopsy (major suck) procedures to monitor progress and assess response to treatment. These procedures are performed every other week. I will also be given large amounts of high dose steroids to help my body respond. As for side effects I am told that everyone responds differently. I will definitely be tired with possible debilitating fatigue and I will definitely lose my hair. The other side effects vary and are manageable with medications. I was told that if I was nauseous during pregnancy then I am more likely to be nauseous from the chemo. I had an almost constant mild nausea during pregnancy but didn’t throw up so I would expect it to be like that. There are multiple medications for treating the nausea. My tastes can change and certain foods could taste awful. I will have decreased appetite but that will be counteracted by the steroids which will increase my appetite and also add fluid weight gain. Side effects peak at around days 7-10 following treatment.
The kids have been in to visit frequently. They are having a hard time with all of this, of course. I wish I could protect them from all of this but I can’t. Here’s pick of Xanderrific reading the comics in my room.