Monthly Archives: August 2012
We won’t know for a week yet what the plan is for next round. I will either continue another round of chemotherapy either on the maintenance phase or go for a bone marrow or stem cell transplant. Allogenic means that it comes from another person. And since they remove the marrow via apherisis vs. manual it is really more of a stem cell transplant. I really need to read that book more closely. It’s just so boring!
Dr. Vasu will call me as soon as she has info on the potential donor but that is only part of the answer. The transplant is scary scary for me with lots of potential complications that could go on for years. The question is if I need it or not.
Here’s the big poll!
Waiting and presence are also known as patience which is a word I don’t like and avoid. Of course, I’m not patient. I’m sick. But I’m at a point that I have no choice. I have to wait too long for too many days in a row to be in agony over the hours. I can’t keep waiting to live.
I have been feeling horrible since Thursday. I went to bed at 7:00 that night and short of going to take pictures of Amira’s first day of kindergarten and a couple times out of bed I slept until Sunday morning. The fatigue is debilitating but it’s better than the nausea I feel when awake. I have three prescription drugs but I still manage to throw up once a day. Today it was in the car but Jeffrey is always prepared for a vomit emergency. I’ve also had this strange feeling of restlessness and being unsettled. It’s from the meds but if I’m not sleeping I feel anxious. Most alarmingly I’ve had shortness of breath with small activities. Walking across the room or taking a shower require a rest time afterward. We finally decided to call Dr. Vasu on Sunday. Of course, she says to go to the ER and of course the ER doc wants a CT scan because he is scared of a pulmonary embolism. He said I was textbook case. At least in my case there is no waiting in the waiting room or even triage. They get us in a room right away. The bed was about 2 feet wide and made of spikes (I’m sure of it) and the temp was set to minus 2 below zero. I pictured myself wrapped in a mummy bag hanging from a icy ledge in a bivouac on one of those deranged expeditions to prove you can withstand cold while climbing uphill to where there is no air. I needed an IV for the CT scan and I also had to wear a heartrate monitor while balancing on the 2 ft bedboard in frigid conditions.
Finally, I got my CT and it came out clear and the doc was relieved but maybe a little disappointed that he didn’t catch a PE in the leukemia patient. I convinced him to let us go home for the night even thought he wanted to admit. We were due back in the clinic Monday morning so we were let go.
I’ve discussed this before but again, I don’t know what takes so long at the clinic. Today I got two bags of chemo and a blood transfusion and talked to a nurse practitioner and we were there from 10:00-5:30. Waiting. It takes two hours just for the blood to drip in. Jeffrey is working and i have entertainment devices but I can’t seem to focus on anything so I just sleep. Jeffrey likes to joke that I take my “James nap”.
The blood and fluids I got today are supposed to help with my shortness of breath and so far they have. My numbers are low in all areas so the theory makes sense. I just hope it lasts long enough for me to get some relief.
I will continue to look for peace and joy in the everyday because its too soon to get tired. Here is the puke bucket that has now become my friend. It doesn’t look like much but it’s always there when I need it.
I have not attempted to read any cancer books myself aside from the informational booklets that have been given to me by the doctor. But, I got a cute picture book for the kids. It’s called Nowhere Hair by Sue Glader. Link Amira’s favorite line from the book is “We don’t get to the park as much; Mom likes the couch a lot”. She thinks that’s hilarious.
The book uses simple language to talk about where mom’s hair might have gone and she looks different but is still the same. It briefly mentions “medicine to cure her cancer” but does not go into detail. This is perfect for Amira’s age but Xander wants more information. He asks difficult questions about how chemo cures cancer and wants to know the details. I give him the books from the doctor and let him ask as many questions as he wants. Unfortunately, I don’t have the answers to everything. He understands much more than his sister. From the beginning we were honest and told him that I have cancer in my blood. I remember him thinking for a minute and then saying, “That can’t be good because your blood goes all through your body.”
I am scheduled for my second Reiki appointment this afternoon. I’ll be honest. I don’t know how I feel about Reiki. I am a skeptic about most things but especially psuedoscience and spiritual things. I tried it from a recommendation from a friend and had a positive experience. I can’t say that I felt any energy transference but Im not ready to discount it yet.
For those not familiar with this practice (and I hope I get this right) Reiki is the ancient practice of “healing hands” Beyond that I have to go to wikipedia. It has to do with energy and healing. It seems to be popular with nurses and involves a spiritual element that I don’t quite grasp. There is no massage involved they just place their hands on various points on the body while I lay in a meditative state.
As skeptical as I am I found that after my last appointment my almost constant head and neck pain were gone and the debilitating fatigue I had been experiencing was significantly lessened. I went from not being able to get out of bed and requiring several naps a day to being able to stay alert and active all day. Maybe it’s the meditation, maybe it’s the counseling session provided afterward but placebo effect or not it was worth it. One of the practitioners said that she located fear in my abdomen. I have definitely been struggling with fear lately but it isn’t a stretch to imagine that a person in my condition has some fear. The intention of the session was finding strength to continue working toward wellness.
I scheduled this second session because I have been feeling negative lately and some positive energy and empowerment will be necessary. This is a long, long fight and I’m already dragging. The chemo I got last week left me exhausted and nauseous all the time. I’m back to eating my chemo foods of plain rice with butter and mayo sandwiches. Gross, I know, but my tastes have changed and while ice cream and chocolate turn my stomach things like saltines and american cheese are yummo!
We are heading out in the morning for my Monday lumbar puncture and chemo. I will also have a blood panel run and my suspicion based on how I’ve been feeling this morning is that my hemoglobin with be low and I will need a transfusion. Hemoglobin assists in the transfer of oxygen within the blood and contains iron. Hemoglobin transfers oxygen from the lungs to other areas of the body. A deficiency can have the symptoms of fatigue, shortness of breath, dizziness
Normal hemoglobin levels for Women: 12.1 to 15.1
Thanks, almost everyone, for participating in my little poll. Should we have a poll about whether we have more polls on this blog? The results of yesterday’s poll show that you all are either optimists or don’t really understand what the chemo is doing to my body. My neutrophil count as of Thursday was 80. This put me in the high risk for severe infection category. The chemo kills off everything. And then hopefully my numbers will start to come back but without any leukemia cells. I got a transfusion of platelets last week but I think I’m going to need full blood transfusion on Monday. I can tell that my hemoglobin level is low because the number on Thursday was low and it was trending downward. I have had loss of energy and shortness of breath from small activities. I am more an observer in activities this weekend.
Here is the fam getting ready for their 3 mile bike ride/run. Jeffrey runs while the kids ride. Now that Amira is off training wheels she can keep up with the boys. When they got to the hill she said , “All right!” I hope she never loses that spunk.
Yesterday we met with Dr. Vasu our head hematologist. We talked to her more about the possibility of transplant. One of my potential matches from the donor registry has been contacted and has sent in a blood sample. We will know in a couple weeks how good of a match this person is. We also talked about the pros and cons of a bone marrow transplant. It’s a risky procedure that may not be necessary for me but there is no way to know. The risks of transplant that the doctor is most concerned about is graft-vs-host-disease. The decision will be made when we see how close of a match I have and how well I’m responding to chemo. I can follow the clinical trial’s plan of chemo for 2.5 years or go for a transplant. Reminiscent of our agonizing decision with the breast cancer to choose between a bilateral mastectomy or a second lumpectomy, radiation and medically induced menopause we one again have to choose between this shitty option or that shitty option. This time it’s less our choice and more the doctors but they weigh our opinion seriously. This time with the possibility of death or serious complications threatening at either end it makes the breast cancer treatment decision from last summer seem easy.
As a vocabulary review, Neutropenia occurs after chemotherapy when the patient is most susceptible to infection. The immune system is wiped out due to the depletion of white blood cells. Neutrophils are white blood cells produced in the bone marrow. The average adult has a neutrophil level of 1500.
>greater than 1000. Normal protection against infection
>500-1000. Some increased risk of infection
>200-500. Great risk of severe infection
>lower than 200. Risk of overwhelming infection; requires hospital treatment with antibiotics
This game is called Guess Lauren’s current level of neutrophils
When you keep a cancer blog and you take a few days off from updating sometimes people start to wonder if everything is okay. I’m still here and I’m doing great actually. I’m at The James for my Monday lumbar puncture and intrathecal chemo. For those who haven’t kept up with their vocabulary words that means chemo injected into my spinal fluid to directly treat the central nervous system for the possibility of rogue leukemia cells that might be hiding. I also get another bag of chemo via IV. My platelet count is low today so I’m also scoring a transfusion of platelets. Don’t forget to go donate blood. I’m using a lot of blood and I hear there is a shortage at the Red Cross.
We had a good weekend despite my low blood counts. On Saturday we met a group of friends at the park. They kids got to play and ride their bikes. We were there for 2.5 hours and I started to get tired by the end but it felt great to be outside. Sunday morning I talked Jeffrey into taking us on an outing to Target. He needed some convincing because he didn’t want me at a public place on the weekend. But, I convinced him that if we went early there wouldn’t be a lot of people. I wore a mask and walked around Target with the fam almost like a normal person.
I also ordered Leukemia boots this weekend from the Nordstrom sale. The Leukemia and Lymphoma Society sent me my consolation prize for getting a diagnosis. During my stay at Hotel James Cancer Center the social worker told us we didn’t qualify for any financial assistance but the LLC sends a check to every person with a diagnosis. For no other reason than just being lucky enough to get cancer. At first I thought I should rip up the check and consider it a donation. But then I decided, what the hell, I have cancer, I’m keeping the damn check. I thought it would be useful for all the co-pays for meds etc. After pondering the banality of co-pays I decided that instead of being responsible I would purchase something to amp up my chemo day outfits for fall. All of my fall/winter boots have at least a 3 inch heel and heels don’t go well with my dizziness and instability. So, I ordered much needed knee high leather boots with a low wedge heel. Free pair of boots with every diagnosis should be the new standard. Thank you LLC! I will consider it a loan for now.
Today was day 3 of chemo this week. A friend drove me to the hospital. I’d really like to start driving soon so I will talk to the doctor about it tomorrow. It would be nice to be well enough to drive myself to these appointments. I wore my purple wig because the nurses have come to expect something shocking from me. Today was just one bag of chemo but we were still there from 11:00-2:00. Yesterday we were there from 9:00-2:00 for a blood transfusion and chemo. I really don’t know why it takes so long at the outpatient clinic. I think they all run on “hospital time”.
On the way home we stopped at Panera to get food to go. The restaurant wasn’t busy but I decided it wasn’t worth it to eat there because I’d have to take the mask off. While waiting two young male professionals walked by and one of them started an awkward conversation with me.
Guy: “I like your hair, how did you dye it?”
Me: “it’s a wig”
Guy: “Why are you wearing a wig?”
Me: “because I don’t have any hair”
Guy: “Oh ok, why do you have that mask on, are you sick”
Me: “Yes, I have leukemia”
Guy: “Oh, I’m so sorry.” (nervous laughter)
Me: “it’s okay dude” (echoed with nervous laughter)
Guy: “Have a good afternoon”
Me: “You too, thanks for stopping to chat.”
His friend was waiting at the door and grinning. To try to soften the awkwardness I joked that that’s probably the last time he talks to a girl with purple hair. More nervous laughter…
I have not been in public at all with the exception of places where wigs and masks and sick people are commonplace. I see friends all the time but they know what to expect. I forget in the world of the healthy that cancer is usually the last thing on people’s minds. At The James people see me and know “that girl has cancer” but I guess it’s not obvious in the real world. Or maybe this dude was an idiot.
Last week Wednesday and Thursday were my hardest days and I started to feel improved on Friday. Today I am tired so I expect the same. I have chemo tomorrow (Thursday) and on Friday I see the audiologist for a repeat audiogram to see if my hearing has improved from from the slight loss in the high frequencies from the chemo. Hopefully I’ll feel better for the weekend when I get two days that I don’t have to see a doctor and I don’t have poison injected into my bloodstream.
I’m so thankful for friends who have brought food. You all are spoiling us with all the good food!
A little pint of A+ from yesterday.