My white blood cell (WBC) count this morning was 0.4k, which is around where it's been and not near the 1.0k I need it to be in order for WBC production to be considered to have begun.
Mother's Day was Day 30- the day by which we thought we'd see that magic pop. Today is Day 33.
The oncologist says I should not be worrying at all, and that I need to be patient. (I decided not to explain to him my Impatient status, though he might have picked up on it...). He said their last APL patient was also late with his Pop, and they went through the same frustration and tears with him. For some reason, it's comforting to know a guy in my position cried too.
The oncologist ordered another five days of the Neupogen, which is the white blood cell stimulator delivered through needle injection. That should help me, and he'll add more days if it hasn't worked by then.
Today, I am really trying to be positive. I'm trying to block out the fears. Instead of taking one day at a time, I've decided I'm going to take the next five days as one block. Five days for the Neupogen to work, five days to see the Pop before I let myself worry again. Need to breathe deep and think high WBC thoughts for five days instead of worrying each morning as I await the blood test results from the 4am draw.
Once the WBC count hits 1.0k, the second prerequisite to moving forward is that half of those cells are Neutrophils, which are the main white blood cells that combat infection. Right now I have too few total cells for the lab to count this subtype.
Nonetheless, it would be nice to have some of them. The word reminds me of something you'd find in the skincare aisle at Walgreens. If only it were that easy: "Honey, do you mind stopping on the way home and picking up some Mylanta, Diet Coke, and Neutrophils? I think there's a coupon for the Neutrophils in the glove box."
Kicking cancer (acute myeloid leukemia: subtype M3 (APL)), honoring Lily Elizabeth, and cherishing our new baby girl
Wednesday, May 11, 2011
Monday, May 9, 2011
Patience and Inpatients
The definition of a patient is someone who receives medical care. An INpatient is someone who is kept at a medical facility for more that 24 hours. On my 33rd day in the hospital, I am upgrading my status to an IMpatient.
We had been hoping I would be going home today or tomorrow, with an acceptable white blood cell count. It's been at 0.2k / 0.3k for the weeks since the chemo reset my bone marrow's ability to produce blood cells. We need the white blood cell count to be at least 1,000 in order for me to be discharged (a healthy person's is 5,000 to 10,000). Today we saw a small bump to 0.4k. Unfortunately, not good enough, especially for an Impatient Inpatient.
This evening and tomorrow I will be receiving an injection of a drug called Neupogen, which is designed to boost white blood cell production. The oncologist said it might or might not be effective, but is standard procedure for patients whose WBC production hasn't returned by this time. I asked: if it doesn't work, when do we start to worry? He said we don't; he commonly has patients who don't see count improvements until 40+ days post beginning of chemo treatment. That's a relief to hear.
In the interest of preserving sanity, I am choosing to focus on that positive instead of the possibility of 10+ more days of hospital room service. Although I have the menu memorized, I still use it each time I order, so that I feel more sophisticated (and to verify the dish I pick doesn't have any of their nasty shriveled peas on it.).
I also asked the oncologist if there are any side effects of the WBC stimulator they are giving me today, like oh, say, losing your hair (never mind, got that one covered). He said the only common one is bone achy-ness. That I can handle. I've gotten very good at putting my cap in my hand and saying, "More narcotics please."
If my counts progress this week, I might be out of here by the end of the week. I am hopeful of that possibility, though staying a little guarded in case it doesn't happen. Once I am discharged, there will be a few weeks of recovery and then phase 2.
I know a lot of Inpatients for other diseaseas have much longer stays for which they must feel even more like an Impatient. I admire their courage. I shouldn't complain about my own stint. In that spirit, here is a much more positive take on Impatiens:
We had been hoping I would be going home today or tomorrow, with an acceptable white blood cell count. It's been at 0.2k / 0.3k for the weeks since the chemo reset my bone marrow's ability to produce blood cells. We need the white blood cell count to be at least 1,000 in order for me to be discharged (a healthy person's is 5,000 to 10,000). Today we saw a small bump to 0.4k. Unfortunately, not good enough, especially for an Impatient Inpatient.
This evening and tomorrow I will be receiving an injection of a drug called Neupogen, which is designed to boost white blood cell production. The oncologist said it might or might not be effective, but is standard procedure for patients whose WBC production hasn't returned by this time. I asked: if it doesn't work, when do we start to worry? He said we don't; he commonly has patients who don't see count improvements until 40+ days post beginning of chemo treatment. That's a relief to hear.
In the interest of preserving sanity, I am choosing to focus on that positive instead of the possibility of 10+ more days of hospital room service. Although I have the menu memorized, I still use it each time I order, so that I feel more sophisticated (and to verify the dish I pick doesn't have any of their nasty shriveled peas on it.).
I also asked the oncologist if there are any side effects of the WBC stimulator they are giving me today, like oh, say, losing your hair (never mind, got that one covered). He said the only common one is bone achy-ness. That I can handle. I've gotten very good at putting my cap in my hand and saying, "More narcotics please."
If my counts progress this week, I might be out of here by the end of the week. I am hopeful of that possibility, though staying a little guarded in case it doesn't happen. Once I am discharged, there will be a few weeks of recovery and then phase 2.
I know a lot of Inpatients for other diseaseas have much longer stays for which they must feel even more like an Impatient. I admire their courage. I shouldn't complain about my own stint. In that spirit, here is a much more positive take on Impatiens:
Sunday, May 8, 2011
Happy Mother's Day!!!
I hope all the mothers are having a wonderful day. They deserve an extra hug, kiss, and Godiva today.
Mom, love you and can't wait to see you.
Mom, love you and can't wait to see you.
Saturday, May 7, 2011
Derby Days
Today Animal Kingdom won the Kentucky Derby. I didn't watch the pre-show because Katelyn and Ryan were visiting, so I didn't get the scoop on the contenders. In the past, I've always placed a bet. I decided after the race that if I had bet, it would have been on Animal Kingdom. (Why not feel like I got it right?)
Tomorrow, Mother's Day, is Day 30 of my chemotherapy, which means the last day of this phase. My white blood cell count had a pop yesterday that had us all excited, only for it to be lower again today. I am hopeful we will have a nice jump in white blood cells on Mother's Day, as I can't leave until the white blood cell count is consistently higher. Concurrently, the doctors are transitioning me from the IV blood thinner to a pill form. This transition also needs to be successful before I can go home.
So there are some remaining roadblocks, yet I am getting antsy. I have not been out of the hospital in 30 days. I've begun a training regimen to get my mind and body ready to be back at home (where the doctor has warned me I will need a few weeks of physical adjustment.)
The details of my derby training days:
- Twenty-two laps around the nurses's station equals a mile. Today I pushed my IV pole 12 laps (and ignored the fact that a woman twice my age lapped me).
- I have also begun doing some arm weights with the cans of Boost the dietician gave me when trying to get me to eat despite the lesions in my mouth from the chemo. I am confident I will be able to increase the weight to Vitamin Water bottles within days.
- I've been sitting up for longer periods of time (always with my back to the bed because there's never a time when a nap wouldn't feel like a great escape).
- Finally, I've been working on my mental acuity: I've been playing Angry Birds on my new iPad. According to my scores, my mental acquity appears to be the aspect of my regimen that is most lacking.
Although Animal Kingdom may have taken the blanket of roses, my training days are not over. The doctors may be reducing my steroid dose, but I still have big hopes for when I return home, and for the Preakness and Belmont beyond.
Tomorrow, Mother's Day, is Day 30 of my chemotherapy, which means the last day of this phase. My white blood cell count had a pop yesterday that had us all excited, only for it to be lower again today. I am hopeful we will have a nice jump in white blood cells on Mother's Day, as I can't leave until the white blood cell count is consistently higher. Concurrently, the doctors are transitioning me from the IV blood thinner to a pill form. This transition also needs to be successful before I can go home.
So there are some remaining roadblocks, yet I am getting antsy. I have not been out of the hospital in 30 days. I've begun a training regimen to get my mind and body ready to be back at home (where the doctor has warned me I will need a few weeks of physical adjustment.)
The details of my derby training days:
- Twenty-two laps around the nurses's station equals a mile. Today I pushed my IV pole 12 laps (and ignored the fact that a woman twice my age lapped me).
- I have also begun doing some arm weights with the cans of Boost the dietician gave me when trying to get me to eat despite the lesions in my mouth from the chemo. I am confident I will be able to increase the weight to Vitamin Water bottles within days.
- I've been sitting up for longer periods of time (always with my back to the bed because there's never a time when a nap wouldn't feel like a great escape).
- Finally, I've been working on my mental acuity: I've been playing Angry Birds on my new iPad. According to my scores, my mental acquity appears to be the aspect of my regimen that is most lacking.
Although Animal Kingdom may have taken the blanket of roses, my training days are not over. The doctors may be reducing my steroid dose, but I still have big hopes for when I return home, and for the Preakness and Belmont beyond.
If This was a Thank You Speech at the Oscars, I would get the Hook
Thank you so much to everyone who has been supportive of our family. It feels so good to know we are loved and receiving your prayers. The below is the view from my hospital bed. Without it, these days would be a lot tougher. I have loved hearing the updates from "The Real World." The emails have been just as cherished.
My guardian angel/memento/book collection sits next to the window with the view of the Manhattan skyline. As breathtaking as the skyline is, I prefer to look at my collection. The hustle and bustle of the city is not what I need right now. Your warm thoughts are what power me through. Aunt Lynn, Aunt Mary, and Uncle Bobby, your continued cards and packages have been sustaining. I love and miss you. And thank you Aunt Laura for working with the Cancer Society.
Thank you to my U of MN rowing team. I cannot believe it's been ten years. I have a lot of goals for when I get out of here, and having the strength to do a Power Ten on my erg is one of them. I'm sorry I missed seeing you at the reunion. Thank you Sarah for sending the package and channeling your positive coxswain karma..
Thank you to Jen, my mom, and Kelly for the clothes and hats. My style when I leave here will put the Royal Wedding and Kentucky Derby fashionistas to shame.
Mom (a.k.a. Mouse according to Katelyn), Dad, Matt, Jeff, Jen, and DiAnne: thank you for all the help with Katelyn and Ryan. Thank you to my family for sitting by my bedside, and for reminding me every day how much you love me and how this is just a blip in a wonderful life. I am sure at times you must have been really scared. Lucky for me, I was mostly too doped up during those times to appreciate the setbacks. But now that I do get them, I'm sorry I've caused you concern. We will get through this.
Thank you to Solar Capital for the food that has kept Ryan and Katelyn going ( I have to admit: I am a little suspicicous that Ryan has altered the orders to include more comfort junk food,or he is making side trips to the 7/11...). My bosses and team have been incredibly supportive. I will feel so enthusiastic about returning to work once I'm well enough. I miss all of the team, and the excitement of building our business.
And certainly not least: thank you to my neighborhood friends, both for the meals and the emotional support. At times, I have trouble getting through your heartfelt emails without crying, but I have desperately needed them nonetheless. Audra, your bravery to help me through this, given Sylvie's experience, can be nothing less than a gift from God.
As soon as I'm up for a relaxed backyard BBQ, it is happening. And I'm making you all wear hats!
I hear the Oscar music starting up, my cue to exit stage left.. Anne Hathaway is giving me a dirty look. I return the glare and mumble as I pass her, "Cancer patients can do whatever they dang well want." Then I do an interpretive dance of the Black Swan for good measure.
Wednesday, May 4, 2011
Katelyn 4-D
The last few days have been tough. Maybe because I've been at the nadir of feeling the weakest from the Idarubicin (stronger of the two chemotherapy drugs that wipes out all your blood cells and takes about 30 days to recover from the day of the first dose). Maybe it's because the situation is finally really hitting me. Maybe I miss Katelyn so much my heart feels like it's ripping in two (I've seen her for about an hour and a half total in the last month.). Maybe it's all three. I've been crying at everything. I cry when I drink a smoothie. I cry when I put on chapstick (No, I'm not exaggerating.)
According to the oncologist, my white blood cell count should pop sometime around May 12th (a month post first dose of Idarubicin). I should be feeling a lot more energetic by then, and we should be moving forward on a plan to get me to out-patient status. There's just one caveat the oncologist was discussing with me this morning: I am still on the blood thinner IV to prevent the clotting complication that surfaced the other week. He said I won't be able to leave here until that risk is resolved. He plans to begin brainstorming solutions with the head oncologist this week. So that's my big unknown, in terms of beginning to move on.
At least my white blood cell count, and thus my immune system, should be returning in an anticipated number of days. That should make the Katelyn aspect easier because she will be able to visit more often, as well as making it easier for my parents to visit. Speaking of Katelyn, what better time to embarrass her than when I need something to smile about?
Ryan took the above picture after the Sesame Street 4-D show at Busch Gardens in March. The show was called 4-D because of the 3-D animation on screen, but also because the theatre has fake fireworks, bubbles, rumbling noises, etc.
Katelyn is obsessed with Elmo and Abby, and didn't take her glasses off the entire show. The picture is neither flattering of her, nor of me, but especially not of her. Her hair is greasy, she's got the over-sized fashion glasses, and the pacifier the size of her fist is a nice touch. And finally, she truly did make the show 4-D for me. She was so excited that she completely wet through her shorts and mine. I had to change both of our outfits once the show was over.
Despite our bathroom change, the entire day was fantastic. I have to keep reminding myself that what I'm going through now is a limited number of days. There will be more fantastic days ahead, and more 4-D shows. We will look back on this time as a bad dream. I just need to figure out a plan to emotionally get through each of these remaining days.
P.S. Katelyn: this photo is going in your wedding slide show!
Monday, May 2, 2011
Why Us? (and how?)
The woman on the Purina Puppy Chow commercial doesn't have cancer. Neither do the actresses of the Real Housewives of Orange County. (Any guesses how I've been spending my time...?)
Yet I do. And I don't have any of the Leukemia risk factors. Though I do have to keep reminding myself I have the most curable type. Still, why me? There are 300 million people in the U.S. Thirty to forty thousand of those are diagnosed with Leukemia each year. Of those, 300 to 400 have my type. Forty years ago, my type was a death sentence.
So here I sit in the hospital bed, wondering how and why me. I know that God has a hand in it, maybe not in giving me the disease, but in giving me the strength to overcome it. In terms of how I came to this diagnosis, I will never forget how I got here.
Two o'clock Sunday morning, February 20th, I woke up with a left side pain that had worsened from the day before. I was concerned about Lily at 14 weeks pregnant, so went to the ER while Ryan stayed with Katelyn. Lily bounced around during that ultrasound, and I was told I had a kidney stone. Maybe that's all it was. They couldn't do a catscan to confirm because of Lily. That was the last time I saw her alive.
I was working on a tough project for work, so Sunday and Monday endured a lot of the "kidney pain" to keep up with the project and because I couldn't have pain meds while pregnant. By Wednesday, the pain was gone. Maybe it had simply been a kidney stone coupled with exhaustion from pregnancy.
Friday, March 18th, we left for a vacation to Florida. The pain in my left side had returned. Should we have delayed our departure so I could go to the doctor again, for what I thought was another kidney stone? Maybe, maybe not. Likely they still wouldn't have found anything. If they had, it might have opened a serious of medical decisions difficult for Ryan and I to have handled.
On March 30th, I went in for the routine five month baby body scan ultrasound. This is the moment I wish I could change. To go back to this scan, to see my lovely Lily flit around, and have nothing wrong with her or me. Instead, I lay on the table in panic as my ob/gyn and technician scrambled to determine why there was no heartbeat. How I wish I could take away those moments. Ryan was just as shocked.
Thursday we spent with specialists, trying to determine what had gone wrong. Another ultrasound found nothing. We couldn't tell if she was a boy or girl because of the placement of one foot, but we did get several other pictures of our sweetheart. She was ten inches long, and passed away holding her other foot to her mouth, as if sucking on her toes.
We also had an amniocentesis to determine if she'd had any genetic abnormalities. The one moment of levity that day was Ryan's blood test, in conjunction with the amniocentisis. It had been a stressful day, and he hadn't eaten in hours. They drew one vial of blood, and he almost passed out. They had to bring him crackers and juice, and he was sweating so bad, they had to put a wet cloth on his forehead and wipe the sweat from the arms of his chair. While I was still laughing, the technician brought a plastic bag containing 19 vials of blood to be drawn from me. (Since that day, I've probably had blood drawn at least 200 times, yet I still laugh at Ryan's failed attempt to be tough.)
A counselor also met with us to arrange the procedure to have Lily removed. We were told the safest place to have the procedure was a "a clinic" because they have the most experience. This blog is not the venue for passing judgment on pro-choice/life, but I will say it was the wrong place for my family to be for this heart-wrenching experience.
My parents arrived Friday morning to provide support, and we went for Part 1 of the procedure that afternoon. To enter the brick clinic, we had to receive clearance from bouncers. Check-in was on the second story, behind bullet-proof glass. Given my circumstances, the staff was kind enough to provide my family with a private consultation room. I had blood samples taken, which came back worrisome. The baby appeared to be poisoning my blood, decreasing my ability to clot. The doctor told me my blood counts would be rechecked the following morning, pre Part 2.
We arrived the following morning to a line of protestors, waving signs with graphic depictions of lost babies. Ryan dropped my dad and I off at the door, so we wouldn't have to walk along the line (Mom was at home with Katelyn.). A woman tried to hand me a pro-life brochure. I said to her, "I hardly need that. I have a stillborn." She apologized. Once inside, my dad asked why I hadn't just ignored her. I needed her compassion. I needed someone out there to know this wasn't what I wanted.
The lobby upstairs was bigger and more crowded than the DMV. Saturday is their busiest day. Those women were giving up what I wanted so badly. Again, the staff took us to a private consultation room, and a technician took my blood. My blood levels had worsened overnight.
That morning, for the first time, a doctor hinted there might be something more wrong with me than the baby affecting my blood. I was sent down stairs, where the procedure would happen, but warned I might be moved to the nearby ER because of my bleeding out risk. The room contained a row of lockers for street clothes, a row of recovery beds, and a row of women waiting their turns. By this point, I was sobbing- devastated I had lost my baby and terrified by the doctor's hint that there might be something more wrong with me.
I was given a pill to speed up the contractions that caused chills and nauseau. The procedure should have been done within the hour, but it didn't happen for another four. The doctor came to the prep room and said they'd decided to move me to the ER, so that they could have blood transfusions on hand in case I bled out. Still, the thinking was the baby was hurting me, thus the baby needed to be removed ASAP, despite the risk of the procedure.
It was several harrowing hours at the the ER before I was moved to the OR, during which I progressed to full-labor. I couldn't have an epidural because of the bleeding risk. Let me take a moment to say that Morphine is the most pointless, ineffective drug I have ever been given. By the time I was wheeled to the OR, I was begging to be put to sleep. I think my exact words were: "I CONSENNNNT!"
When I woke, I felt relief. My mom was by my side. They hadn't needed to give me a transfusion, and our healing process could begin. The doctor told me our baby had been a she. A little girl who should have become Katelyn's best friend.
I was kept at the hospital overnight for monitoring. Around 2am Sunday morning, I woke with the pain in my left side, and my face had begun to swell. No one had an explanation for the swelling face, but the medical staff told me to drink lots of water to flush the kidney stone. The hematologist retested my blood and cleared me to go home. We have not yet received this report, and are wondering if he missed something.
The swelling in the face worsened during the week, and the side pain didn't go away. By Thursday morning, April 6th, the pain in my side was so bad, I lay in bed, howling until it was late enough for us to drop off Katelyn at Early Bird day care and get me to the ER for pain management. Now that Lily was gone, they could finally do the catscan. And the history of the complications from the procedure over the weekend led the ER to do more detailed blood testing.
Shortly later, I was told there were abnormalities with my blood. I was moved from the ER to long-term care. Three hours later, a hematologist told me my symptoms indicated I had Leukemia and would need a bone marrow test to confirm. The aching in the ribs (the catscan had shown nothing wrong with the kidney) and face were the result of flat bones releasing the immature white blood cells into my blood stream.
Friday, April 7th, I was moved to this bigger hospital, with my new diagnosis, where I've been since. That week, the amnioscentisis came back clean. It had been my Leukemia that had hurt Lily.
My ob/gyn thinks the events that unfolded around Lily's passing saved my life. I wish that made the loss of her hurt less. I have seen Katelyn four times since April 6th. Ryan says that someday when she is old enough to understand, she will look up to me for what I have endured, and thank Lily for giving her a mom. Right now, her simply wanting to hug me like she used to would be enough.
On a bright note, the head catscan came back clean- no bleading. It remains unclear when I will be able to leave here. Normally the main driver is a recovered white blood cell count, but all my levels need to be back to normal, given the clotting in the liver and bleeding in the lung I have had. In addition to the ATRA chemo drug, I am still taking a steroid to reduce the bleeding in the lung and a blood thinner (Heparin) to prevent further clots, such as in the liver.
Once I am out of here, the next phase of the treatment will be daily IV injections of arsenic. This will mean an hour in the hospital a day, but at least I will be back at home, rebuilding my relationship with Katelyn. The staff here says I am beginning to look better. This is good, but I feel scared and confused. It feels safe in here, constantly being monitored, yet obviously I want to be back at the house, back to normal. I want this to have never happened to me. I want to be having a baby August 14th. I want to know "Why Us?"
Yet I do. And I don't have any of the Leukemia risk factors. Though I do have to keep reminding myself I have the most curable type. Still, why me? There are 300 million people in the U.S. Thirty to forty thousand of those are diagnosed with Leukemia each year. Of those, 300 to 400 have my type. Forty years ago, my type was a death sentence.
So here I sit in the hospital bed, wondering how and why me. I know that God has a hand in it, maybe not in giving me the disease, but in giving me the strength to overcome it. In terms of how I came to this diagnosis, I will never forget how I got here.
Two o'clock Sunday morning, February 20th, I woke up with a left side pain that had worsened from the day before. I was concerned about Lily at 14 weeks pregnant, so went to the ER while Ryan stayed with Katelyn. Lily bounced around during that ultrasound, and I was told I had a kidney stone. Maybe that's all it was. They couldn't do a catscan to confirm because of Lily. That was the last time I saw her alive.
I was working on a tough project for work, so Sunday and Monday endured a lot of the "kidney pain" to keep up with the project and because I couldn't have pain meds while pregnant. By Wednesday, the pain was gone. Maybe it had simply been a kidney stone coupled with exhaustion from pregnancy.
Friday, March 18th, we left for a vacation to Florida. The pain in my left side had returned. Should we have delayed our departure so I could go to the doctor again, for what I thought was another kidney stone? Maybe, maybe not. Likely they still wouldn't have found anything. If they had, it might have opened a serious of medical decisions difficult for Ryan and I to have handled.
On March 30th, I went in for the routine five month baby body scan ultrasound. This is the moment I wish I could change. To go back to this scan, to see my lovely Lily flit around, and have nothing wrong with her or me. Instead, I lay on the table in panic as my ob/gyn and technician scrambled to determine why there was no heartbeat. How I wish I could take away those moments. Ryan was just as shocked.
Thursday we spent with specialists, trying to determine what had gone wrong. Another ultrasound found nothing. We couldn't tell if she was a boy or girl because of the placement of one foot, but we did get several other pictures of our sweetheart. She was ten inches long, and passed away holding her other foot to her mouth, as if sucking on her toes.
We also had an amniocentesis to determine if she'd had any genetic abnormalities. The one moment of levity that day was Ryan's blood test, in conjunction with the amniocentisis. It had been a stressful day, and he hadn't eaten in hours. They drew one vial of blood, and he almost passed out. They had to bring him crackers and juice, and he was sweating so bad, they had to put a wet cloth on his forehead and wipe the sweat from the arms of his chair. While I was still laughing, the technician brought a plastic bag containing 19 vials of blood to be drawn from me. (Since that day, I've probably had blood drawn at least 200 times, yet I still laugh at Ryan's failed attempt to be tough.)
A counselor also met with us to arrange the procedure to have Lily removed. We were told the safest place to have the procedure was a "a clinic" because they have the most experience. This blog is not the venue for passing judgment on pro-choice/life, but I will say it was the wrong place for my family to be for this heart-wrenching experience.
My parents arrived Friday morning to provide support, and we went for Part 1 of the procedure that afternoon. To enter the brick clinic, we had to receive clearance from bouncers. Check-in was on the second story, behind bullet-proof glass. Given my circumstances, the staff was kind enough to provide my family with a private consultation room. I had blood samples taken, which came back worrisome. The baby appeared to be poisoning my blood, decreasing my ability to clot. The doctor told me my blood counts would be rechecked the following morning, pre Part 2.
We arrived the following morning to a line of protestors, waving signs with graphic depictions of lost babies. Ryan dropped my dad and I off at the door, so we wouldn't have to walk along the line (Mom was at home with Katelyn.). A woman tried to hand me a pro-life brochure. I said to her, "I hardly need that. I have a stillborn." She apologized. Once inside, my dad asked why I hadn't just ignored her. I needed her compassion. I needed someone out there to know this wasn't what I wanted.
The lobby upstairs was bigger and more crowded than the DMV. Saturday is their busiest day. Those women were giving up what I wanted so badly. Again, the staff took us to a private consultation room, and a technician took my blood. My blood levels had worsened overnight.
That morning, for the first time, a doctor hinted there might be something more wrong with me than the baby affecting my blood. I was sent down stairs, where the procedure would happen, but warned I might be moved to the nearby ER because of my bleeding out risk. The room contained a row of lockers for street clothes, a row of recovery beds, and a row of women waiting their turns. By this point, I was sobbing- devastated I had lost my baby and terrified by the doctor's hint that there might be something more wrong with me.
I was given a pill to speed up the contractions that caused chills and nauseau. The procedure should have been done within the hour, but it didn't happen for another four. The doctor came to the prep room and said they'd decided to move me to the ER, so that they could have blood transfusions on hand in case I bled out. Still, the thinking was the baby was hurting me, thus the baby needed to be removed ASAP, despite the risk of the procedure.
It was several harrowing hours at the the ER before I was moved to the OR, during which I progressed to full-labor. I couldn't have an epidural because of the bleeding risk. Let me take a moment to say that Morphine is the most pointless, ineffective drug I have ever been given. By the time I was wheeled to the OR, I was begging to be put to sleep. I think my exact words were: "I CONSENNNNT!"
When I woke, I felt relief. My mom was by my side. They hadn't needed to give me a transfusion, and our healing process could begin. The doctor told me our baby had been a she. A little girl who should have become Katelyn's best friend.
I was kept at the hospital overnight for monitoring. Around 2am Sunday morning, I woke with the pain in my left side, and my face had begun to swell. No one had an explanation for the swelling face, but the medical staff told me to drink lots of water to flush the kidney stone. The hematologist retested my blood and cleared me to go home. We have not yet received this report, and are wondering if he missed something.
The swelling in the face worsened during the week, and the side pain didn't go away. By Thursday morning, April 6th, the pain in my side was so bad, I lay in bed, howling until it was late enough for us to drop off Katelyn at Early Bird day care and get me to the ER for pain management. Now that Lily was gone, they could finally do the catscan. And the history of the complications from the procedure over the weekend led the ER to do more detailed blood testing.
Shortly later, I was told there were abnormalities with my blood. I was moved from the ER to long-term care. Three hours later, a hematologist told me my symptoms indicated I had Leukemia and would need a bone marrow test to confirm. The aching in the ribs (the catscan had shown nothing wrong with the kidney) and face were the result of flat bones releasing the immature white blood cells into my blood stream.
Friday, April 7th, I was moved to this bigger hospital, with my new diagnosis, where I've been since. That week, the amnioscentisis came back clean. It had been my Leukemia that had hurt Lily.
My ob/gyn thinks the events that unfolded around Lily's passing saved my life. I wish that made the loss of her hurt less. I have seen Katelyn four times since April 6th. Ryan says that someday when she is old enough to understand, she will look up to me for what I have endured, and thank Lily for giving her a mom. Right now, her simply wanting to hug me like she used to would be enough.
On a bright note, the head catscan came back clean- no bleading. It remains unclear when I will be able to leave here. Normally the main driver is a recovered white blood cell count, but all my levels need to be back to normal, given the clotting in the liver and bleeding in the lung I have had. In addition to the ATRA chemo drug, I am still taking a steroid to reduce the bleeding in the lung and a blood thinner (Heparin) to prevent further clots, such as in the liver.
Once I am out of here, the next phase of the treatment will be daily IV injections of arsenic. This will mean an hour in the hospital a day, but at least I will be back at home, rebuilding my relationship with Katelyn. The staff here says I am beginning to look better. This is good, but I feel scared and confused. It feels safe in here, constantly being monitored, yet obviously I want to be back at the house, back to normal. I want this to have never happened to me. I want to be having a baby August 14th. I want to know "Why Us?"
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