New Normal, New Habits

With Jenelle, we've always been adjusting to our "new normal" as we like to call it. Whenever Jenelle meets a new milestone, or has a set back, it changes our normal routine. And thus, we experience what we call a "new normal. Lately she has been really thriving, and our "new normal" gets easier and easier.

During my first week back to work, the new HR manager at my firm told me to start making "new habits" for myself. "New habits" to be healthier. I've kept those words in mind each day as I slowly adjust to the new schedule. My new habits include drinking more water, eating healthier, and listening to my body when it tells me it needs a nap. I can't help but compare the phrases "new normal" to "new habits." In many ways, they sound similar, but are very different. "New habits" can be made for yourself, while a "new normal" is a change you adjust to. I think the "new habits" are easier.

Like I said, Jenelle is really thriving, especially in her eating. She is really chewing more, and able to tolerate more foods. Her menu now includes pasta, beans and rice, chopped chicken or turkey and pizza! All of these items have to be cut into small pieces of course, but she is chewing and handling it very well. Instead of pureeing lots of veggies for her, I now give her mostly what we are having mixed up in a bowl. This weekend she also grabbed my fork and fed herself. She sure loves her food!

Jenelle is also adjusting real well to first grade. She enjoys using the adaptive switches to play computer games at school, and is being taught to use a switch that activates a voice that says "bathroom" whenever she has to go! Her progress has been amazing, and each day we are so very proud of her.

Jack is doing well in 3rd grade, and is very busy with football and Fall baseball. I hope we don't burn him out, but he sure does love his sports. If there can be one blessing to come from my having cancer, it was the opportunity I had to spend the summer with Jack at home while I was on disability. There are so many times that his needs are thrust to the back burner because of Jenelle. I think he really enjoyed our special outings together. He has matured so much this year, and is such a joy. I am so thankful.

Finally, some photos to share. The first is of Jack on his first day back to school. I think he's getting too old for photos at the desk.

This adorable photo was taken on Brett's birthday. The timing of Jenelle's smile was just perfect.

Here we have Jenelle all ready for her big brother's football game! It is really cool that Jack was #1 last year because now it is the perfect jersey for Jenelle to wear to the games.

Here is a photo of Jack as he fell asleep in the living room clutching his UCLA football. He plays till he drops!

And finally, a new hair update! A few weeks ago I went to my stylist, Chaz, to cut off the fuzz and add some color. I'm learning to style the curl and like the lighter color. I just hope it grows faster in time for my driver's license photo in January!

That's all for now. Thank you for the continued prayers! I'll keep you posted!

More Hair

I was waiting to update on Monday, but realized it had been a while since my last update. Things are going well for all of us and we had a wonderful 4th of July. I rested most of the day and we spent the evening at a friend's home enjoying food and fireworks. The good news from the 4th is that Jenelle enjoyed the fireworks and didn't have seizures - Yay!



Jenelle has taken her door knob turning talent to daycare and has "snuck out" the front door at daycare twice now! Thank goodness they have a gate! The second time she did it, we're told the sprinklers were on, so Jenelle got her own little bath in the process. She is quick!



Jack is having a great summer and really enjoys having me home. He has mostly been doing baseball camp during the day and playing with lots of friends in the afternoons. He is very busy, but loves to tell me goodbye in the morning before he heads out.



I am doing well, but am still shedding a lot of dead skin. A lot of the pain is gone but I'm still really tired and weak. The doctor still has me on a very high dose of Predisone, and that just makes me shaky and tired. I can't wait to see her next week to hopefully start coming off this drug!



And finally, I took a new photo to document my hair growth. It is really coming in now, and is soft, full and curly. I have no idea what to do with it so I mostly wear baseball hats all the time. I think I need a trip to my stylist soon. Here is a photo for you to enjoy - notice there is no gray! ;)

And just because he's so cute, here is Jack at an Angels game enjoying summer!

Thanks for the continued prayers. KCA!

Turning the corner

Early last week, a friend from the Internet who had a blog I often read passed away. Her name was Deb, and you can read all about here at her blog, Debutaunt. I knew Deb had cancer, but didn't know what specific type of cancer. Then a friend told me it was Leukemia. It hit home a little bit. Deb was diagnosed with Acute Lymphoblastic Leukemia in 2005, had a bone marrow transplant, but relapsed right around the time I was diagnosed with AML in November.

Last week, I went back to read some of her blog entries, where her last post was in February. When she relapsed, her last posts pleaded with friends and readers to donate blood because she was unable to get transfusions she needed due to low supply. I mentioned this to Brett and talked about how fortunate I was to have so many donors when I was going through induction, and it seemed UCLA never ran out of blood.

Now you understand my shock when they had to delay my platelets the other night because they they didn't have my blood type. Thank you all who made the drive to donate, especially Michael Allen and Kim Estrada, who missed our boy's Championship Game to donate. Blood supply is critically low here in Southern California, so even if you aren't my blood type, please consider donating in my honor. I'd hate to think that someone in a more serious condition would be denied such a life saving thing.

As for an update on me, I've gone a whole day with a fever around 99.8. The doctors still consider that a fever because I do not have an immune system. The good news is I have 10 neutrophils today, so with the fever passing and signs that my blood levels are going in the right direction, I should recover in a few more days. I still have open sores, so outside visitors are still to be kept at a minimum.

As for that Championship Game, the boys won with Jack making the last two outs. He has a couple more tournaments coming up so hopefully I can catch some of those last games. He is doing well but misses me, and Brett says Jenelle is her usual "cute."

Thanks for the thoughts and prayers, please keep them coming! KCA

Need Blood and Platelet Donations

If you are in Southern California and your blood type is A Positive, I could use your platelets. I was supposed to get Platelets today but the blood bank was out of my type. I need type specific platelets as O negative gives me a rash. The nurse told me that the bank is critically low right now on blood and platelets.

To donate to me specifically, you have to donate at the UCLA blood bank on Galey. I'm sure they can use any type to help increase the bank, but it you donate and you are A positive, please ask that the blood/platelets be used for me at Santa Monica.

For more information, check out UCLA's Blood Bank website.

My fever is lower today, around 101.8, and I'm starting to get a rash on my arms, possibly from one of the new anti-biotics. I am getting two different IV antibiotics, one IV anti-fungal and one IV anti-viral. They are pulling out the big guns to get me through this. My neutrophils are still at zero so my body isn't helping much. I feel pretty crappy and am enjoying the Benedryl naps I get. I still can not have visitors.

Thank you for the continued thoughts and prayers. KCA

High Fever and Infection

Just a quick update on me. It seems it was a good idea to admit me to the hospital on Friday, because I started spiking a fever Saturday evening. It's the kind of fever that starts with chills, then goes really high. Yesterday it hit 102.8. An Infectious Disease doctor was called in and she requested a second MRI and some tests, and also added a second anti-biotic and an anti-viral.

My first MRI from Friday was to make sure my mouth sores were not solid abscesses. Thankfully they aren't because I didn't like the idea of having to "lance" them if they were solid. The second MRI is to rule out encephalitis as I've been having horrible headaches.

I haven't been as stir crazy this visit because I've been feeling pretty lousy. I sleep most of the day. The doctors have advised as few visitors as possible because of my open sores on the outside of my lips. Right now we are fighting a raging infection and we don't need to add to it. My neutrophils are still 0 so my body doesn't have much of an immune system to help the fight.

If you wish to pray specifically, please pray that my fever subsides and that the antibiotics start to work. Thank you for the continued thoughts and prayers. I'll update more when I can. KCA!

Mommy is in the hospital

On Thursday, I had my blood labs drawn. Earlier that morning, I woke with some horrible mouth sores, something I hadn't expereienced with the past chemo. My Home Health Nurse was concerned, and said she would call me with my numbers later in the day. As it turned out, my blood levels were really low - I only had 8 neutrophils, and you remember from the past that isn't a good number.

This morning, the mouth sores were much worse and the left side of my face is swollen and painful. After consulting with my next door neighbor (who is an oncology nurse) I called my doctor and she wanted to have me admitted for IV antibiotics to treat the mouth sores and the swelling. With my low white blood cell count, a simple thing like mouth sores can get out of hand easily. I'm in a lot of pain so this time if feels safer to be here because I know they can give me the good drugs. Also, better safe than sorry.

Unfortunately they did not have beds at UCLA campus, so I am once again at UCLA Santa Monica. The nurses all remembered me when I arrived, and I got the biggest room with the best view overlooking the ocean. We hit Memorial Day Traffic driving up here and it took two and a half hours. As you can imagine, things work slowly in a hospital. I checked in at 5:30 p.m., and am still waiting for IV antibiotics at 8:45 p.m. I found out the delay is because they want an MRI of my mouth sores. Apparently I should be going any minute, which means another hour.

If my numbers start to rebound quickly as my doctor predicted they would with this round, I should be realeased after a few days of IV antibiotics. Not exactly how I wanted to spend Memorial Day Weekend, but at least I'm on the road to getting well, and I know this is the last chemo until I'm on maintenance meds.

Thanks for the continued thoughts and prayers. Please pray for a quick resolution to this infection so I can go home soon! KCA!

Our Little Steel Magnolia

The other night, I watched the movie Steel Magnolias. For many reasons that movie has always been one of my favorites, probably because I have many amazing southern women in my life that remind me of some of the characters and many of the lines in that movie are hysterical. Those of you raised by a southern woman know what I talking about. However, in watching it again the other night I was struck with how much the role of Julia Roberts reminds me of Jenelle, which of course would make me Sally Field, the mother who vigilantly fights for her daughter every minute of her life.

Julia's character Shelby suffered from Diabetes and even though she tries to stay on top of her health, her body often gets the best of her. Her struggle to try to live a normal life with marriage, children and work remind me of Jenelle's everyday struggles. Jenelle has struggled to accomplish so many amazing and unexpected things even though her brain tries to slow her down. And each time I think of how Jenelle has overcome the odds, I am reminded that she is a special gift and that things could change in an instant. Like Shelby says in the movie, "I'd rather have 30 minutes of wonderful than a life time of nothing special." With Jenelle, we have had more than our share of 30 minutes of wonderful, and I feel so blessed for that gift.

I didn't mean to get too deep with that movie analogy, but wanted to share what I was thinking. Jenelle seems to be doing really well since we increased her seizure medication. She has been a happy little girl of late and is using her hands to play with toys. Also, she is doing more exploring of the house and is finding her way down the hall to her room to play with her toys there. Last Sunday, she made her way to her room and I caught her napping in the sunlight with a toy in her hand. She is very happy right now, and we are enjoying every minute. We are grateful for these moments with Jenelle where she has seizure control and is able to explore her world and enjoy 30 minutes of wonderful.

As for me, I am still home and am starting to worry that I made the wrong decision in not wanting a hospital admission. Last night I started to run a low grade fever, and I've had a sore throat for three days. The sore throat could be a side effect of the chemo (remember chemo attacks all living cells) but I've had a runny "clear" nose to go with. I spoke to Dr. Territo this morning and she gave me the go ahead to start oral antibiotics. She was not too concerned with my symptoms, and told me that the antibiotics should take care of it over the weekend. If not, I am to call her on Monday, or go to the ER if things get much worse. Her exact orders were to stay in bed and drink lots of fluids. That I can handle, and I have to trust her comfort level with this plan.

As for my Mom, she has been moved to a rehabilitation center where she will stay for 2 weeks. Her heart tests were fine and they found some fluid on her lungs, so it is possible she had walking pneumonia, and the shortness of breath caused her fall. Turns out she broke not just her tail bone, but the bone that protects all of the nerve endings in the spinal cord. It's no wonder she has been in so much pain.

So that is our update for now. Thank you for the continued thoughts and prayers. Please send prayers that the antibiotics start working and that I can continue to stay in the comfort of home during this chemo recovery. We're in the home stretch now and I can hardly wait to be done with all this IV chemo stuff.

Thanks again - I'll keep you posted! KCA!

New plan - Stay Home!

Yesterday we saw Dr. Territo, my oncologist, for a follow up. We were told to expect to be admitted if my numbers were zero. After a long wait, the numbers came back in really good shape. I am no where near zero yet, and in fact my blood is so healthy I could donate platelets if I wanted (or could.)

Dr. Territo said that it is possible that I may not hit zero with this last chemo drug. It's a slim chance, but sometimes it just does that. She is willing to keep me home for as long as possible, and said that if all goes well and I may not even need to be hospitalized. None of the protocol changes, I still need to be isolated, and still need to call immediately if I start to run a fever, or have vomiting and the like. She gave me some antibiotics in case we need them, and is planning to see me in two weeks, assuming I'm still home. Please pray it stays this way!

As for my Mom, it looks like she could be having some issues with her heart, which could be the reason she fell last week. She is still in the hospital and they are still running a lot of tests. I don't know more than that, but I'm sure she wants to be home.

So that is the plan for now. Thanks for the continued thoughts and prayers.

KCA

Just Waiting

On Friday, I received my last dose of the chemo drug. While I haven't had any nausea, this drug has made me extremely tired. So much so I sleep a lot and my vision is very blurry. It's been hard to type to update, so this may be all you get for now. The doctor expects me to be admitted for neutropenic watch on Monday, and that could last 3 to 4 weeks.

My hospital support system took a hard hit this week when my Mom fell and broke her coxy bone. She had been traveling to stay with me in the hospital and now is resting her own injury. She is currently in the hospital at St. Agnes in Fresno and in a lot of pain. Please say some extra prayers for my Mom.

I'm taking lots of projects for the hospital and hope that things like Fantasy Baseball and the NCAA tournament keep me occupied. I'll update when we are admitted. Thanks again for the continued thoughts and prayers!

KCA

Round 3, Day 1

The photo above was taken with my cell phone today of the chemo med I got via IV. It's called Mitoxantrone (mye-toe-ZAN-trone) and yes, it's "smurf" blue. Very strange to say the least.

We drove to UCLA today to begin Round 3 of outpatient chemotherapy and we lucked out with Brett getting my appointments moved to an earlier time of 10:00 a.m. However, tonight I had a message moving my appointment tomorrow to noon, but no word on the rest of the week. Please pray it stays at 10:00 because that works best for the rest of the people lined up to drive me to UCLA and back. Tomorrow I am traveling with my Aunt Joanne and Uncle Jim. I am looking forward to catching up!

I got to see my oncologist today as she stopped by to give me a prescription. Dr. Territo thinks that my counts could be down to zero as early as Friday (meaning I will be admitted then) or Monday. We're hoping for Monday so I can have two extra days at home as this weekend is crazy busy. As it turns out, the chemo I am getting this Round will drop my counts quicker, and require a longer recovery. I'm told to expect a 3 to 4 week hospital stay. Oh joy!

Dr. Territo also got to settle an argument between me and Brett. In the last week, Brett announced that I had 2 more "rounds" of chemo after this one. I didn't like that idea to say the least, and was pretty sure I had one more round. Needless to say, always bet on the wife! I was correct and after this round, I will have one more IV round of chemo, then once I've fully recovered, I will be able to return to work (possibly late July!)

I know many of my wonderful co-workers will be happy to hear that (and believe it or not, I miss work too!) Speaking of which, last week the doorbell rang and a messenger gave me a box of daffodils that my co-workers purchased and sent to me to help lift my spirits! At least 12 vases in all with three teddy bears all benefiting the America Cancer Society in honor of their Daffodil Days! To my surprise, the daffodils bloomed the very next day and we are currently enjoying a burst of yellow in the kitchen! Thank you all for thinking of me, it truly brightened my day!

That is all for now - I will update when I can! KCA!

Trip to UCLA for Jenelle

Today was our 6 month check up with Dr. Shields at UCLA for Jenelle. It was a good visit. We spoke with Dr. Shields about Jenelle's new seizures of late, and he feels they may be do to yet another growth spurt. Jenelle has gained 3 pounds, and 2 inches since he saw her last September. Dr. Shields decided to increase Jenelle's Felbatol as we have a lot of room left for an increase of that drug. Brett and I agreed with that since Jenelle has done so beautifully on Felbatol for the last 3 years or so. If after the increase, we continue to see the same seizures, we'll let Dr. Shields know and we'll go from there.

Dr. Shields was thrilled to hear about Jenelle's first word ("Mum") and agreed that we were going to see some differences in Jenelle as she reacts to what's been going on with my cancer treatment. He feels my absence in December definitely was a part in getting Jenelle to verbalize the word "Mum". Dr. Shields wants to check Jenelle's blood work again to make sure her levels are OK, and will see us again in 6 months.

As for me and the start of Round 3, no word yet on whether or not next week is approved. I spoke to UCLA this morning, and they asked me to contact my HMO to help get the authorization approved. I made a couple of phone calls, but still no word. Brett and I were thinking if I can't get approved for Monday, we may have to go ahead with a hospital admission for me to get the chemo, in order to keep everything on schedule for me to be out of the hospital for Jack's First Communion. Isn't it weird how insurance companies work? It's easier to get admitted, clearly something more expensive, than it is to authorize an outpatient procedure. It boggles the mind. In the mean time, we are working on a driving schedule to get me to UCLA each day next week in hopes that everything is approved.

The fundraiser on Sunday was very successful and many thanks goes out to my good friend Erin for all her hard work in planning the event. Brett and I attended the event and it was good to see so many of our friends and family. In all honesty, it was a little overwhelming at times. We are so very fortunate to have such a wonderful support group around us. Thanks again to everyone involved.

That is all for now. I will update when I know more. Thanks again for the continued thoughts and prayers. I will keep you posted.

Round 3 Delayed

I just got the news from UCLA that Round 3 of chemo is going to be delayed for a week. The lab results from yesterday's blood draw are not yet available and apparently my insurance has not yet approved Round 3. I received notice last week that COBRA was going into effect for my insurance as of March 1, but that I have until the end of April to start paying. I think that may be a cause for the authorization delay. UCLA decided it was best to wait another week so they could have more time to work with my insurance. I am happy with this decision as it will give me more time at home and hopefully more time for my happy pills to take effect. ;)

This Sunday there is going a Happy Hour/Silent Auction Fundraiser on our behalf at the Auld Irisher in Orange. One of my best friends since college, Erin Armstrong, approached us in January with this idea. We were hesitant at first, but Erin insisted that many people wanted to help us out and that we should let them during this time in our lives. Erin has done all the planning, and I'm sure the event will be a lot of fun. Brett and I have constantly wondered if we have done enough in our lives to be so deserving of such friendship and charity. We are overwhelmed and so very grateful at the outpouring of love we have received. We hope to stop by for a little bit on Sunday and thank our wonderful friends in person.

Please email me of you are local and would like information on Sunday's event. Thank you again for your continued thoughts and prayers. I'll keep you posted. KCA!

Follow Up & Round 3

Last Thursday, I had my follow up appointment with the oncologist's nurse. The good news is that my numbers are good; my neutrophils were at 1,100 - 1,500 is considered normal. The unexpected news was that they want me back to start Round 3 of chemo on Monday, March 9. We were surprised to hear this as we thought I might get a month off like last time. Of course, hearing this with my emotions being so down, I did not take the news well. I wanted to desperately be out of the hospital just a few weeks ago, and now I have to go back so soon.

And contrary to what we were told in January, Round 3 will consist of 5 doses of chemo, not 3 doses. I will also be given a drug that I haven't received, so we are not sure how I will respond. I still have the option of receiving the chemo as an "out patient", and then only returning to the hospital when my counts go to zero like last time. After a long talk with Brett, we are considering the "out patient" plan so I can have some more time at home. This will require that we drive to UCLA 5 days in a row. Brett's parents and my good friend Erin have offered to help out, so that will take some of the stress off Brett. We have until this Thursday to make that decision. The oncologists wants to see my numbers this coming Thursday. If they are still low, she may delay Round 3 another week.

On the up side, it will be good to get this done. If I start Round 3 on March 9, I will definitely be out of the hospital for Jack's First Communion ceremony on May 9. However, I will most likely be in the hospital for Easter.

We spoke to the nurse about my depression, and she put me on some happy pills. The pills have really helped me sleep, but I haven't seen much difference yet in my mood and emotions. The nurse said that I must have been a very active woman prior to my cancer - she has no idea. I've been praying a lot for more patience, as we are almost more than halfway done. I realize I've been very fortunate in all this that I've responded so well, but still it has been long and hard to endure.

Last weekend the kids started Little League again, and I got to go to Opening Ceremonies and watch their first games. It was really hot this past weekend, and I was very tired with all the events. Still it was wonderful to spend time with the kids.

I will let you know when we start Round 3 as soon as we get the go ahead from my oncologist. In the mean time, please send prayers for my patience, that I can weather these last two rounds better than last time.

Thanks for the continued thoughts and prayers. KCA!

Home

It has been wonderful to be home, however I am concerned at how this last hospital stay was so difficult on me emotionally. I have a follow up appointment with the oncologist on Thursday, and I am going to ask her if it is possible that I'm depressed. A social worker informed me last week that high doses of Vitamin A can often bring on a swift bought of depression. Judging from all the emotions I had in the hospital, I think its best to check it out fully and talk to my doctor. It isn't safe to fool around with such things.

And even though I'm home, I'm still isolating myself from the general public since we don't know if my immune system numbers have finally reached safe levels. I had blood drawn last night, and should get those numbers on Thursday. I imagine all is well as I haven't spiked a fever, but better safe than a trip back to the hospital if I get really sick.

Since being home, I haven't been sleeping well. I guess I'm still on hospital time; IV change at midnight, blood draw at 3:00 a.m., vitals at 4:00 a.m., etc. I think a sleeping pill is in order for this evening.

And since this is Jenelle's website, I thought I'd give an update on her as well. Unfortunately, Jenelle is showing an increase in seizures lately. We haven't heard her in the middle of the night, but she has had a lot at daycare. We have an appointment for Dr. Shields in early March, so I'll continue to monitor it and discuss it with him then. Perhaps another adjustment in medication is in order.

Thanks again for the thoughts and prayers. I'll update again after our follow up this Thursday.

Definitions

WHAT IS A NEUTROPHIL?

A neutrophil is a type of mature (developed) white blood that is present in the blood. A cell is the smallest, most basic of life, that is capable of existing by itself. White blood cells help protect the body against diseases and fight infections. Neutrophils are essential in protecting the body against disease and infections by removing and destroying some types of bacteria, wastes, foreign substances, and other cells. Neutrophils accomplish this by eating these substances. They are the main type of white blood cell that protect the body in this way.

WHERE ARE NEUTROPHILS MADE?

Neutrophils are made by the marrow (a tissue that fills the openings inside of bones). Neutrophils are sometimes made outside of the marrow as well. After the neutrophils are formed, they are released into the circulating blood.

WHAT PERCENT OF WHITE BLOOD CELLS ARE NEUTROPHILS?

Approximately 50% to 70% of white blood cells are neutrophils. Neutrophils are the most common type of white blood cell. The amount of neutrophils on blood work tests is known as the ANC (absolute neutrophil count). On most blood work tests, the ANC will be presented in terms of the amount of neutrophils per mm3 (cubic millimeters) of blood. The normal range for the neutrophil count is 1500 to 8000. It is important to keep in mind that the ranges mentioned above will be different depending on the machine used to do the blood test. Always use the normal range printed on the lab report to decide what range is normal.

Neutrophils are also essential for a process known as proteolysis, in which water is added to bonds that make up proteins so that they can be broken down into smaller substances. Proteins are extremely complex, naturally occurring substances made of amino acids that are essential to the body's structure and function.


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Still at zero Neutrophils! Please do a dance or whatever to help get them growing for me! Thanks!

Feeling Down

Down on neutrophils that is. Today my neutrophil count was still zero, and even my doctors are a bit surprised. They had hoped for some increase by now. There are medications that can be given to help boost neutrophils, but I'm told that with my type of leukemia, they are not recommended because they could also "boost" any hidden cancer cells as well. So, for now I wait and pray for an increase my neutrophils. Anything but another zero again.

On the up side, I had a slight fever a few days ago of 100.2, and had to go through a fever work up where they run lots of tests to find out if there is any infection brewing. They also started an antibiotic and I've been on it for 3 days and the low grade fever is finally gone. I got some platelets on Tuesday and because it was not type specific, I had what looked like the start of a rash with a bunch of red spots on my arms and legs. Thankfully today that is looking better. And yesterday I got two units of blood so hopefully that will help give me a boost. So no infection, no rash, all we're waiting on is my neutrophil count and then I can go home! That can't come soon enough!

Thanks for the thoughts and prayers. I'll update when I can - KCA!

For Brett

My very own "falling star"

In case you've forgotten the joke behind this, click here.

New Hospital

Brett and I arrived this afternoon at UCLA Santa Monica. While is isn't as new as the Ronald Reagan Hospital in Westwood, I do have my own room, TV and Internet access. I'm really getting tired of hospitals. Or more specifically, being a patient in a hospital. I pray this stay is short.

My Mom is arriving tomorrow to stay with me, so it's safe to tell you what happened earlier this week. I didn't want to alarm my Mom, but Brett insists I share the news that I now get to have a "falling star" outside my hospital room because I fainted on Tuesday when my home health nurse was taking blood.

It was the strangest thing, and I've never fainted in my life. The nurse arrived early in the morning and I hadn't eaten. As I sat at our table watching her draw blood from my PICC line, I got a little light headed and sweaty. She asked if I felt faint and I told her I wasn't sure. We decided to try to move me to the couch and according to Brett I made it within a step of the couch and then fell back (where the nurse caught me.) I honestly don't remember even standing up from the chair. The nurse called my oncologist right away and she wasn't concerned. She ran an extra test to make sure I wasn't anemic. I stayed in bed most of the day and felt fine that evening. We believe it was the low blood sugar from not eating before the blood draw. We're being cautious now so I lie on the couch for all blood draws at home.

It was a wake up call and made me realize now why I'm restricted from driving. I have been feeling great, but it seems with blood cancers things can change quickly. I look forward to talking to my oncologist to get a better idea of how long I have to stay. We really want to keep visitors at a minimum to help me avoid infections so I can get home sooner. I'll update when I get more information from my oncologist.

Thanks again for the thoughts and prayers! KCA!

Heading back for Round 2

I'm not sure which is worse; being immediately taken from your bed at home to the hospital and being told you'll be there for a month, or knowing and having time to plan ahead as you are go back to the hospital for another month. In the first instant, you are in too much shock and still adjusting to your diagnosis. In the second instant, you know what to expect and you can't get out of it.

The last couple of days have been tough for me sleep wise. I've been up late worrying about the kids and how this will once again disrupt their normal lives. That part hurts the most, and knowing I won't see them for a while. Brett will be with me most of the time, so that is a comfort and something I look forward to. I try not to think about the procedures, because I know eventually I will get my energy back. This has to be done, and we may as well get started.

UCLA called this morning and scheduled the placement of my central line at 9:15 a.m., and my ECHO heart test at 10:15 a.m. I was quite surprised because I imagined we'd just drive up there, casually check in, get cozy in my room and then maybe get around to the procedures and such sometime in the afternoon, but it sounds like they mean business. Brett and I have learned from my last stay, and will not be giving out my phone number. If this chemo round is anything like last time, I should be feeling bad half way into it. I'm not taking nearly as much luggage (or clothes) and will try to update here when we can.

UCLA says that I will be there to receive 5 days of chemo via IV, and when that is done I will come home. They estimate that I will be home for 5 days with a nurse visiting every day until I get neutropenic (when my immunity is very low.) Once that happens, then I will be back in the hospital for another 3 weeks. It seems weird, and wrong to get that "down time" at home, but I keep reminding myself that UCLA does this all the time, so they must know what they are talking about, and they must trust that I will be fine. If that is the case, I should be home on Monday, and back in the hospital February 5.

Thank you all once again for your thoughts, prayers, gifts, and for those of you helping us out with the kids. After this round, I'll be half way to being done. I'm looking forward to passing this next hurdle, and truly appreciate having you all on my side as we continue to Kick Cancer's Ass (KCA!)

Thanks again - I'll keep you posted.

New Routine = "New" Normal

I looked in the mirror last night and realized with my bald head, and my ears that stick out due to lack of hair... I look like my Grandpa Trawick! On the positive side, I am told that my bald head is a "pretty" one and that I have a nice, round head. I wholeheartedly agree.

Things have been going well since my being home. My fever finally went away the day after Christmas, and I am getting stronger everyday. Even my sciatic nerve is getting better. I am getting out more; we go out to lunch a lot during "off" hours (so as to avoid crowds), and today I went to Jack's basketball game. I also drove my car for the first time since before Thanksgiving for a quick trip to the local Blockbuster (literally half a mile from home.) Today Blockbuster, tomorrow Starbucks! ;)

While I know Jenelle has changed me in so many ways, one of the "new Jenelle lessons" I have come to realize is my ability to adapt to "new normals." As an A type personality, you can imagine the shock to my routine in the following weeks after Jack's birth. It's amazing how what you think is going to happen goes out to door with a new baby. You learn, even us "A type" personalities, to be flexible. Then we had Jenelle, and a year later learned very quickly how to deal with many changes in our routine. We were constantly learning our "new" normal.

That is what being home has been like for me; learning a new routine and a new normal. But I must say, I think because of all the flexibility we've learned to accept because of Jenelle, this "new normal" is easier to accept. Or perhaps I just know not to fight it, and go with what works.

Brett has been amazing. He is literally taking care of 3 kids at times (myself included) and I think is on his last thread of sanity. Thank goodness the kids go back to school tomorrow. Having our "old" routine back will be a blessing to this "new normal" that we are getting used to.

My next follow up appointment is this Thursday. I'm hoping that I'll have at least one more week before having to return for round 2. At least through the weekend, as we are having a small party for Jack's birthday on Saturday (which also happens to be my 39th birthday (i.e. 40 minus 1!) I am actually looking forward to my 39th year, as I know I will only get better and will be able to celebrate the big 40 in remission and with a new healthy outlook on life (and some new hair!) That is the perfect new year's resolution, don't you think?

We're still on the KCA campaign. Hope your new year is going well. Thank you for the continued positive thoughts and prayers.