Monthly Archives: December 2012
Marrow.org is the website for the Be The Match bone marrow registry. It is also an informational resource and strives to provide support and education for patients and families. A month or so ago I received a Fed Ex package from them containing booklets, pamphlets and a DVD. I didn’t ask for this and I was unprepared to look through it it so I put the whole package in a corner of the bedroom to ignore until later. They got my name and address since the hospital had begun the process of securing my transplant. We have a little more than a week before things get serious. I survived the educational classes at the hospital without a panic attack so I finally broke into the Fed Ex this weekend.
The booklets didn’t give any information that I hadn’t heard before. Marrow.org has most of the info on their website. One thing they did include was a DVD made for children called Super Sam Versus the Marrow Monsters. Saturday Amira seemed to have more questions than usual. At dinner she said, “Mom, I have just one question about your cancer. Can kids get it?” I was honest and told her that yes, my cancer is the most common childhood cancer but it’s not contagious. She asked if she could get it and I told her it was possible but probably not and that kids get better much easier than adults. I decided to put the DVD in the PS3 for us to watch together as a family. Super Sam is a cartoon kid who has leukemia and needs a bone marrow transplant. It’s written for children who are themselves patients but it explained blood cancers very well using direct language. It includes interviews with doctors, nurses and children who have gone through the transplant process.
I also found some helpful diagrams and explanations about my disease, ALL, on NCI. Xander prefers to read for information opposed to watching but the cartoon was most helpful for Amira. This diagram shows that the blood production begins in the marrow with the stem cells. From there myloid cells and lymphoid cells are made. The type of leukemia depends on which type of cells are affected. AML (Acute Myeloid Leukemia) and CML (Chronic Myeloid Leukemia) affects the myloid cells and ALL (Acute Lymphoblastic Leukemia) and CLL (Chronic Lymphoblastic Leukemia) affects the lymphoid cells. The acute leukemias are fast growing and require immediate hospitalization and treatment or will kill within weeks. The chronic leukemias are slow growing and may be diagnosed long before symptoms appear and do not always require immediate treatment. Many patients with CML or CLL live for years before starting treatment.
I was originally diagnosed at the cancer center (not saying which one) with CLL and sent home. I was called a couple days later and told they were wrong and I needed to be admitted immediately to the James. Only two hospitals in Ohio treat acute leukemia, OSU medical center and Cleveland Clinic. Thankfully, OSU is only 15-20 minutes from our house.
To test the body for leukemia the doctor can look at the CBC (complete blood count) but need to biopsy the bone marrow for a definitive diagnosis.
The bone marrow shows the exact type of leukemia. I have B cell ALL. As for prognosis my advantages are that I’m young and otherwise healthy, the leukemia has not spread to my central nervous system and I have been in remission since beginning treatment. I came in with a high white blood cell count which is what makes transplant necessary to keep the leukemia away. It can hide in the body and show up later without long term treatment. My white blood cell count was 45,000 at my initial cancer diagnosis and jumped to 63,000 by the time I was admitted to the hospital. Normal WBC is between 4,000 and 11,000. I am currently at 9,000.
I was given a shot of a drug called Neulasta following my last chemo. The purpose of this is to help my WBC rebound more quickly. It worked but the side effect is bone pain. I have been experiencing this for the last week or so. My whole body hurts but especially in my joints. Pain meds help but since I can’t take regular advil, tylenol etc I’m not able to drive after taking a pill. I enjoy being chauffeured around but on the days I have to drive I can’t take anything for the pain. I’m hoping this starts to get better soon.
We have had so much bad news that it’s unimaginable and I can’t handle listing it all in my head because it would likely take over and annihilate me. We met with a social worker as part of the routine pre-transplant work-up and she asked how we are doing emotionally. We laughed and said we practice a lot of avoidance and ignorance. If we don’t need to know it right now then we don’t ask and we don’t worry about it. I will do whatever it takes to get better and sometimes it’s best not to know what it will take.
We are celebrating every bit of good news that we receive. I heard from the James today that 1. My donor was medically cleared to undergo the procedure and give me bone marrow. 2. Preliminary examination shows no red flags on my heart and lung testing and I will likely get medical clearance for transplant and 3. my bone marrow and cerebral spinal fluid both tested negative for leukemia cells again at my most recent exam. I have been feeling cautiously optimistic about the transplant since I have started the education classes and physical work-up. I have short term and long term goals to look forward to and I know I have good chance. People have successful transplants and I can be one of them.
Short term goals for hospital stay (things I have to do everyday even if I don’t feel like it) :
1. Eat 3 times a day
2. Walk 30 minutes 3 times a day
3. Take a shower every day
Edited to add a 4th super important goal:
4. Watch season 2 premieres of BOTH Girls and Enlightened on HBO on 1.13.13. Super excited about this. Almost excited enough to forget and the crap I have to do.
That’s probably about all I can do in a day. I have been in the hospital and sick enough to know that those things will take all of my strength. They are within my control and something I can do to help myself.
Long term goals (things to look forward to):
1. Get home to be with my family
2. Central line can come out on day 75
3. Be able to take care of the kids in the summer
4. Go back to work in August (probably just part-time)
5. October wedding in San Diego
I don’t have control over how my body responds to the transplant. There will be radiation and chemo that could possibly do irreversible damage. I don’t know what will happen with those things. It will be what it will be and I choose not to worry about them.
I did have to go to the hospital the day after Christmas in the snow. We stayed at home and relaxed for all of the holiday because I haven’t been feeling great. I’ve had a mild sore throat and I’ve also had body aches. I haven’t had a fever so the 11th floor James has let me wait it out at home. Since my aches and pains have persisted we went in to get checked. Jeffrey drove me and the kids in the Jeep. He dropped me off and took the kids to the bookstore. They did blood work and a check-up. My blood counts are great. Almost normal even. WBC was 9, hemoglobin 9 and platelets 330. I’m even up a few pounds thanks to the holiday cookies that people like to bring me. Hemoglobin is low for a normal person but good for a leukemia person. They usually don’t transfuse until you get down to a 7. I still have a sore throat so I have to talk to the doctor Monday about going to see an ENT.
Little Big Girl exhausted after taking Mommy to the hospital.
I’ve been getting some questions and hearing some confusion on the marrow registry for marrow.org. This is the national registry for those willing to share stem cells or bone marrow to save a life. Not to be too dramatic but it really can give a person a chance to have their blood cancer cured. I have my chance coming up thanks to an anonymous donor.
I completely understand the hesitation to register. A couple years ago I heard about the opportunity to register but I didn’t research or really consider it because I thought it would be too much for me to do for a stranger. For me I didn’t know what it involved and I didn’t take the time to find out.
I was thinking about a blog post to explain the process but I read an article on CNN that tells it from the perspective of a donor. All it takes is a cheek swab to register and most donors give stem cells via an apheresis donation.
My Christmas present from Jeffrey. Infinity bracelets to go with the leukemia bracelets that he always wears.
I have a hard time getting any sympathy from friends and family these days. Since I’m walking and driving and fairly independent my minor complaints are getting brushed off with comments like, “at least you are alive” and “well, you aren’t in ICU so you are fine”. Today is a long day at the hospital of tests and procedures. Most of them involve needles and varying degrees of pain. I got a ride so that I can snow myself with meds for the worst of them. Jeff gets to drive me home drunk. I will have a sore lower back from the lumbar puncture and a painful ass from the bone marrow biopsy and my arm is already sore from my flu shot and radioactive tracer injections. I’ll keep whining until I get some sympathy.
All went well at our appointments yesterday. We had an educational class on allogenic transplant that answered a lot of questions and put dates to things and seemed somewhat hopeful about the future. If all goes well I can get my central line out on day 75 and return to work after 6 months. That seems like so so far in the future and maybe impossible to attain but it is my long term goal and would make me very happy.
The doctor went over some details. She has all the statistics and scary stuff. Dr. Vasu is good for speaking frankly although she has tried to soften it a touch since I told her that I would prefer that she insert a few more unicorns and rainbows into her speeches. Before I receive the new bone marrow I will have a new central line put in, 3 days of twice daily total body radiation and 2 days of high dose chemotherapy. I asked the doctor if I could use sunblock on my face for the radiation. She looked at me and looked at Jeff then asked “Are you joking or is this a serious question?” Jeff says, “Unfortunately, she’s being serious.” Dr Vasu goes into a speech likening my treatment to the nuclear radiation disaster in Japan and how she’s more worried about my heart, lungs and liver than my skin. She also said that leukemia can hide in skin and also in the brain so, no, I may not use sunblock for my radiation treatments. I reminded her that I’d like to hear more rainbows. I told her I would do whatever she said I needed to get better but that doesn’t mean I want to know statistics. She often shakes her head and smiles during our conversations because she’s not sure what to make of me.
We found out that my donor is for sure in Germany. He is 28 years old and will be having surgery on January 14 in the afternoon to remove bone marrow from his hip. For those of you who want to be on the donor registry, keep in mind that MOST donors only have to go through a series of shots and an apherisis blood donation in order to remove donor stem cells. I’m special though and my poor guy has to have surgery. At least they put him out for this. I have this procedure often (including today) and they just give me local anesthesia. He will have pain for the first few days and then will be sore for a week or so. Someone from the James is flying to Germany on the 14th and will put the bone marrow on dry ice in a cooler and fly it to the US and hand deliver it to the James for me to receive the marrow by the afternoon of the 15th. It is given to me as a blood transfusion and the marrow cells will (hopefully) find their way to my waiting bones and begin producing healthy bone marrow. Transplant day is day Zero. Over the next couple of weeks the cells will graft and my blood counts will start to come up. After that I can start to get better. I will have a new and improved immune system, blood type and DNA. I should probably send my donor a thank you card.
That’s the quick summary of transplant. There are multiple drugs meant to prevent the new immune system from attacking my body and there major risks with each procedure and medication but the benefit of no more leukemia out ways the risk.
It’s amazing how much hair can fall out before you are completely bald. On the old chemo regimen I only lost about 50% of my hair and the rate of growth slowed significantly but it never all fell out. On the standard adult protocol chemo my hair is falling out everywhere. It will all be gone in a couple days. It doesn’t bother me too much but it’s very itchy and little hairs are everywhere. I was standing at the mirror brushing cascades of hair off with my hand and trying not to clog the sink (sorry, Joe) and Amira came in and said, “Mom! You look like a bald eagle!” Later in the day she wanted to take my picture and she went and got me a wig first.
This week I will have 3 days at the James. Monday is blood labs to check my levels. Thursday and Friday I will be doing my pre-transplant testing and paperwork. Friday I was emailed a calendar of events that starts Thursday at noon and ends Friday at 4:00. Testing includes labs, pulmonary function test, chest X-ray, MUGA scan and meetings with financial counselor, social worker, three different clinical trial coordinators transplant education and the doctor. Other scheduled tests include an EKG, physical exam, bone marrow aspirate and biopsy and a lumbar puncture. I could worry about all this but I won’t. I have some of the best doctors in the country and I will do whatever they tell me to do. It has worked so far.
I felt very well this weekend and my blood levels are up but still used precautions in public to try to keep me from getting sick. Xander was home from school with a cough and I tried not to get too close but I was exposed. I just have to hope that the anti-virals and my sad amount of white blood cells are enough. I had energy this weekend to go to a party and out to dinner with Jeff and another night make roast beef and potatoes for my hungry family. I took the kids to a children’s group grief support class at the hospice center where they made picture frames, Christmas cookies and talked about their memories of PopPop. Kid’s grief groups are sad with some kids who have lost parents or siblings. Every day right now is a trial but we are still together. We are still a family. We took Amira to see Santa and she asked him for something she hadn’t mentioned before so I had to do rush shipping from American Girl. Xander wouldn’t see Santa, of course, so no surprise requests from him yet.
This is supposed to be my good time and I’m trying to make the most of it but by evening all I want to do is snuggle in warm under the covers. I’m making full use of the TVs that are obscenely large for this small house and my Amazon Prime, Hulu Plus, Netflix and HBO Go accounts. I should probably read a book. A book requires too much effort at times. I try to not think.
I stumbled across a super cute website that sells plush organs as replacements for all my missing and damaged body parts. iheartguts.com has it all although I really hope I don’t have to add to my collection. I may put in a request for red and white blood cells.
This is an ovary and fallopian tube to replace my left side (or was it right?) that was removed.
I need a pair of these mammary glands. The silicone is an adequate replacement but not the real thing.
The pancreas. Mine still isn’t working properly and this one is just so huggable.
I fell asleep last night with a bunched up washcloth propped between my face and the pillow to try to stop the incessant nose bleed that has afflicted me for a full day. It was 2:00 AM and I hadn’t been able to fall asleep yet despite taking a benedryl AND an ambien earlier. The benedryl was to counter effect the histamines causing full body itching from the dose of oxycodone that I took for my sore back and leg that was lingering from my lumbar puncture. It’s a medication cycle with one med precipitating the need for another and so on. The nose bleed continued on and off all day. I took Amira to a birthday party at the bowling alley. I was trying to be normal, look normal and do normal things. I should have known better. My friend leans in close and says, “Lauren, is your nose bleeding?” Horrifying. After 10 minutes or so of not getting it to stop her husband offers to drive me home and I let him even though he made jokes about me needing to kick my coke habit. Amira stayed to finish out the party because she loves cake and friends. I know this is my “good” time so I’m trying to get out and see and do. I will have a few months of isolation after the transplant.
I have some cancer patient fashion/beauty tips to share today:
1. Synthetic wigs look great in the rain because they do not frizz like my natural wavy hair.
2. Moisturizing cream, lots of it, put it everywhere
3. My one must have make-up item is under eye concealer so I don’t look half dead all the time.
4. When I’m not wearing pajama pants I’m wearing legging jeans tucked into boots to make an easy quick outfit that looks great but is super comfy because you are wearing LEGGINGS!
5. Clear Tegaderm from CVS is a much less noticeable central line cover than the stuff from the hospital. It’s super expensive so you have to be really vain (like me) to buy your own.
6. My lips were super dry and peeling until I switched from lip balm to pure whipped shea butter. I apply it at least a dozen times a day.
7. Chemo is actually really great for acne. I haven’t had a zit in months.
8. Steroids plump up your face diminishing the need for Botox. It’s a good thing too because I don’t have enough platelets for needle shots.
I ate half a hamburger and fries at Cap City for lunch today and it was delicious. Progress! I almost lost it on the way home but I kept it together long enough to get down an ativan.
Today was lumbar puncture with intrathecal chemo day. Regular readers should know what that means but for those new to leukemia-ville that means that they stick a needle into my spine, drain some fluid and then inject poison into my central nervous system to kill off and prevent rogue cells from multiplying. It’s just as much fun as it sounds although some are more painful than others. I have a prescription for topical lidocaine that is put on before giving the numbing injection because that shot burns. Usually the LP goes without incident but sometimes the clinician hits a nerve and I get pain. That happened today. Pain down my leg and up my spine the whole time she was holding a needle in my back exchanging fluids. Jeffrey was on his lunch break (he curiously seems to need lunch right when I’m getting a procedure) and I just texted him, “Done, bring caffeine”. Before any of you call Jeffrey a big ole meanie for not holding my hand I have always excused him from the squeamish procedures and the really ugly stuff. I couldn’t save him from the scariness of ICU but we don’t need to be picking him up off the floor during one of my procedures. He does enough so if I can spare him that stress then I will.
The nurses asked me today if I’ve had a lumbar puncture before. I laughed a little and said, why yes, I had one just six days ago. I’ve lost count on how many really but I think I need a third hand to count them all. I opted for an unmedicated childbirth with Amira just so I could avoid that needle and yet now I face it regularly.
We are still on track for transplant. It is undecided if I will need more chemo between now and then. Even though I’ve had these chemo meds before this treatment was at much higher dosage. I was completely wiped out for a couple days. I slept all day and night barely waking when nurses and doctors came in. I also had no appetite at all. I lived off Boost Breeze Wild Berry. One of the food pushing nurses made me a milkshake but it had ensure in it and tasted like metal. She brought in a warmed brownie but it sat there untouched. Nutrition came in to take my order and I just said whatever cause I knew I wouldn’t eat it anyway. Usually there is something I can eat even if it’s just one thing. I ate 4 fried eggs a day once for a week and then once it was corn chips but at least I could eat something. This time? Blah!
The thing about getting better is that it doesn’t seem real because I know it’s going to get worse again. I’m just putting muscle back on and trying to get healthy for the next time I get really sick from chemo or side effects. I feel like after the transplant even though I will be very sick for a long time once I start to get better I actually have a chance of staying better and I may see forward progression instead of this back and forth stuff. Until then I don’t see a point to trying to have any kind of “normal”.