One would think that getting six bone marrow aspirations is hard, but today I had to do the hardest thing since being diagnosed with ALL. Today, I had to shave off the curls I’ve had for years. I knew this day was coming, but it didn’t make it any easier. I feel like I’ve just been avoiding the inevitable. Of course there were tears, but I don’t ask “why me”. It’s the quintessential part of getting chemo, right?

There’s two things I’ve realized since shaving my head:

1.     It’s COLD without hair! I’m sure I’ll get used to it, but I do have a wide variety of hats to put to good use.

2.     Looking in the mirror is going to be a tad different for the foreseeable future. When I see my reflection, I expect to see curls not a bald head. While I see someone different, I have not changed.

This is just another part of the journey. I will continue to take it one step @ a time. In a couple of days it will be 2013 and I have big plans for this coming year!

Till next time…KMS

So…I got good news! I have 0% blasts in my bone marrow! Which means all this crazy chemo is really working. I continue to feel good. I’m keeping busy reading and eating myself out of house and home. I started a book since I’m done with my school work. I’m sure I will be reading quite few over the next couple of weeks. In addition to my eating and reading I continue to try out new recipes. Tonight I made Ina Garten’s lemon chicken breasts. It’s definitely worth a try J  

Till next time… KMS

I hope everyone had a Merry Christmas. I was fortunate enough to be able to spend the holiday with family J

Believe it or not today was day 29, the last day of induction! The days have been flying. Today I had a bone marrow aspirate and lumbar puncture. I cannot believe I am done with induction. When I first started this process all I ever said was “I don’t look past day 29” and here I am.

While it is day 29, we do not know where the road will take us from here. The official lab will read the results in 3 business days. With the holiday and all, the appointment is not until next Wednesday. While it feels like a long wait, I have become accustomed to waiting. We will continue each day one step @ at time.

Till next time…KMS

I am happy to report I had a good week! I was able to finish up my Fall 2012 coursework. I just emailed my teacher my literature review, so I am official done! I set my goal for before Christmas and I did it J I am off from school for a month. While I am excited for the break I never know what to do with myself as I have been in school for so long. Besides working on my paper this week, I have been busy this week experimenting with some new recipes. Tonight I was craving Chinese for dinner so I made fried rice with chicken and broccoli. Since I can’t eat out I decided I would make my own! Chris reported the rice to be a success, but I think I need to work on my chicken and broccoli.

I had a lab check today. Everything looked good, so I don’t have to go back till 12/26 if all goes well. That is day 29 believe it or not!? I will have a bone marrow aspiration and lumbar puncture and we will then find out what is to come. The results will go to the study lab and I will be placed into the risk group. So soon enough we will have a better idea of what is to come. But for now I continue to take it one step @ a time. I am just happy and thankful to be home.

Till next time…KMS

Sorry I haven’t blogged! Much to my surprise, I was discharged home on Saturday afternoon! It was a very pleasant surprise because I expected to be there until today. I had a relaxing day at home yesterday with Chris and Subie. Today was a long day of treatment (8:30am-5:00pm), but I cannot complain because I get to come home J I do not have to go back until Friday for a lab check. I am hoping to finish up my literature review for school so I will be done for the semester! I also have some Christmas presents to wrap and thank you cards to write. It is hard to write the thank you cards, because thank you doesn’t seem like enough for all of the thoughts, prayers, love and support I have received. I am truly lucky to be surrounded by such amazing people in my life.

Till next time…KMS

Well tonight I am blogging from the 12^th floor of Smilow. I am just getting settled into my corner suite. I did not expect to get admitted today, but that’s what this crazy journey involves—the unexpected. It is just precautionary to monitor my labs. I am hoping for a short and uneventful stay. As always, I will take it one step @ a time. Chris and I will be enjoying our Friday night movie on a much smaller screen J I will blog tomorrow to keep everyone posted.

Till next time…KMS

The one month mark:

Today is exactly one month since my diagnosis. I can honestly still sit here and say I am not sure it feels real. What makes having cancer feel real? Is it the bone marrow aspirations, lumbar punctures, or long treatment days? I am not quite sure I have figured it out yet. I am waiting for that “a ha” moment, but it is yet to come. I get out of bed every morning and pretend I am going to go to work or school. Like I might have woken up from a bad dream and everyone will look around and say “Wow Katelyn handled that really well”. But then I stop in my tracks to remember to take my laundry list of 9:00am medications. I still have not had a “why me” feeling. Yes there have been some tears, but those are expected.  I feel like I just push forward taking this on one step @ a time. Honestly, who has time to ask “why me”, I have things to do. I am sure there will be some days to come but for now I hang in there and just push forward, wondering when it is going to hit me.

I had another bone marrow aspiration yesterday. It showed 1% blasts in my marrow! I was shocked to hear this as just the week before I had 43% blasts. I guess this crazy stuff is working J Although I question them every time because I still have my hair. (They say this week…or next. Or who knows maybe never.) While I jump for joy at 1% blasts, I still sit here and think 2 years and 1 month to go. It’s a little bittersweet. I will continue to go day by day till day 29. That is the end of induction therapy. I will then be broken off into a risk group for consolidation. I will have a little bit of a better understanding of what the next phase entails.

I was able to complete my final exams over the past two days. All I have left to do is my literature review and I am done for Fall 2012! I cannot wait. Just one semester left till graduation! I am pretty sure they are going to have to hold me down from running across that stage J

Well off to enjoy some dinner with Chris…

Till next time…KMS

Today was day 15. Believe it or not half way through induction! It was another bone marrow aspiration and treatment day at Smilow. It was a long day because I also had to be transfused. Everything went well for the most part. Dad was there to keep everyone in check today. I am now home eating some ice cream J I still have a pretty good appetite. I am feeling tired but will head to bed shortly.

Tomorrow I will be sitting for one of my final exams. I am almost done with the semester! It will be nice to have a month off from school. I am sure after about a week I am not going to know what to do with myself since I can’t venture out. But, I will be starting the consolidation phase of chemo so I am sure there will be much to learn. I continue to take it one step @ a time, so I don’t look that far into the future. It is too stressful to speculate.

Everyone is surprised I still have my hair. I am surprised too. I keep telling them that it isn’t working. (although my labs are going in the right direction). Some people say this week (week 3) is when you lose it…I don’t think they really know. We will just have to wait and see.

I want to thank everyone for the thoughts, prayers, comments and cards. I am lucky to be surrounded by such supportive people.  

Till next time…KMS

The past couple of days have been pretty uneventful. I have been hanging around the house with Subie doing school work. I continue to feel good, just noticing I am more tired.

Tonight, 10 years after I gave my parents approximately 20 gray hairs each I had to remove my belly button ring per MD orders. One would think “She still has one of those!?” Yes, yes I do. It has just always been there. I never changed the ring; it was just a part of me. I got my belly button pierced on my 15^th birthday; the day I thought I might give my dad his first of many heart attacks. It was something every girl who danced got. You had to have your nails done and belly button pierced. No ifs, ands or buts about it. I somehow convinced my parents that is was necessary to my survival and they caved! I now look down at my belly button and laugh. I remember telling them how necessary it was for me to have it, carrying on and on. After weeks (of course I started in early J) of nonsense all but 10 years ago, it is gone and we laugh. Now I send them a picture of the ring that once was. It is just one of the many things I will have to deal with on this crazy journey which we have embarked upon. A simple one, but oddly enough important to me to write about.

Well I am of to bed, I have a date with Smilow tomorrow.

Till next time…KMS

Today was a long day at Smilow (7:30am-4:30pm). Today I had a lumbar puncture with intrathecal chemo, bone marrow aspiration and 2 rounds of IV chemo. Overall, everything went good. I am tired now, but still feel good. No nausea or vomiting (and I hope to keep it that way!). I do not have to go back till Thursday for lab work, so I have a couple of days off. I am hoping to get some schoolwork done. Tonight I was able to Skype my case presentation to my seminar class. It was nice to see everyone and to be part of class!

The weekend was nice and quiet. Subie came home which was exciting. She is back to running the house. It will be nice to have her home with me during the weekdays. Kelly and I got some serious studying done on Sunday. It truly felt like a “normal” weekend. Notebooks, whiteboards and a little Nora Jones on Pandora J

While I did not get all of the news I would have liked to receive today, I have to look on the positive note. The blasts (aka: bad cells) in my bone marrow have decreased since I started treatment. I was being overly optimistic that they would be much less. But like my APRN, family and friends say they are decreased after just one round of treatment. I had another treatment today so hopefully they will continue to decrease. My dad just told me “Slow and steady wins the race”. Well as much as I would have liked the number to be less, I am happy it decreased and I will continue to go on one step @ a time.

Well, I am off to bed early tonight. I am beat after all of those crazy chemo medications. Thank you again for all of the thoughts, prayers, and support. I am surrounded by many amazing people J

Till next time…KMS

Day 6: SET FREE!

I was discharged home today! I am happy to be in my own environment. I sent Chris out to fill my prescriptions and now I feel like a 90 year old with all of these medications. I am going to have to get used to it as it will be my new “normal”. (I laugh because I am now the proud owner of an am/pm pill box J) Of course the CVS trip could not be uneventful. Poor Chris spent an hour there and then I still had to call. But, thank goodness I have an amazing woman on my team to help problem solve! We now have a solution and I can rest easy.

Being in the hospital was definitely a unique experience. I think it honestly will change how I practice nursing.  As my mom told me when I got diagnosed, “You will be a changed person”. I am beginning to believe her more and more every day.

All in all I am home, have my medications and I can relax and catch up on the DVR with Chris tonight. I am hoping to have a relaxing weekend at home as I have a big day on Monday.

 

P.S:  I think I enabled commenting from any email address (not specifically Gmail). Let me know if it worked!

Till next time…KMS

Day 5:

I had another treatment today. This was a unique one because it can cause some serious reactions. It was a little nerve racking, but I had my girls here to keep everyone in line! Knowing the side effects of some of these chemo medications is scary. Some people say it is like putting poison into your body. I have to say I was honestly scared. Not knowing if something bad is going to happen is a terrifying feeling. After all of the anxiety, I was fine. I had no reactions and I am moving one step closer to going home. I am supposed to be discharged tomorrow. Working in the hospital, you know they never make promises so I will wait for my labs tomorrow morning and will be able to confidently say I am going home once the order is in the computer.

Today I struggled most with having leukemia and being a nurse. Being a patient is not easy. It is hard to be on the other side. I am not sure I will ever get used to it. I am definitely ready to go home and be in my own bed. No 4am vital signs or the resident banging on the door at 5am! As hard as it is, it’s what I need to do to beat this.

All in all, today was hard but at the end of the day I am here relaxing with Chris. I will continue to take everything in stride and go on one step@ at a time. I am grateful for all of the thoughts, prayers, and support. I am truly surrounded by some amazing people!

Till next time…KMS

Day 4:

Today was a good day. I continue to feel good. I had a visit from a new friend today. It was nice to chat with someone who has never met me, yet completely understands my situation. It is amazing how you come across people who you connect with at various times in your life. Besides my visit, it was a pretty quiet day. I was able to take my quiz and work on my literature review.

Today I called the insurance company about a cranial hair prosthesis. The woman on the other end of the line acted like I was speaking another language – Can you spell that? I told her it is the fancy name for a wig. I had to make the phone call because in the coming weeks I will lose the curls that have defined me for 25 years (or maybe 20 since it took forever for my hair to come in J). I am not sure I am ready to lose my hair. I look at the books that have wigs in them and none look like my curls. Who knows maybe I won’t even wear a wig and just rock the baldness. We will have to wait and see.

Well, I am off to bed. I have a treatment tomorrow in the morning.

Till next time...KMS

Day 3:

I continue to feel good. I have had no nausea or vomiting. I had some visitors this morning and had some down time till the evening. I am not sure I can say it feels real. I know I am in the hospital and all, but I still feel good. I am sure I will have my good days and bad days. So far they have been good. The doctor rounded and said I look good. He warned me that I will be getting moody with all of the meds. He told me to warn my husband and parents. So here is the warning: If I am angry or yelling just take what I am saying with a grain of salt. It is not me. Well those who really know me know I can be cranky at times, but from what I have heard this is worse. I am definitely not looking forward to it. It is just a bump in the road. I will beat this and go on to tell my story. How to get your APRN with ALL – catchy right?!

Tomorrow I am going to take my first test from the hospital. It was weird not being in class this week. The day of my first bone marrow aspiration I took a test prior to the procedure. There will be none of that for a while. I will not be venturing out much, expect for my trips to Smilow. I have already started to Christmas shop online. I am sure there are packages at my doorstep waiting for me! Although I love retail therapy, it is just not the same online.

I started reading a blog in the NY Times Well section (Life, Interrupted By: SULEIKA JAOUAD). It is written by a girl who was diagnosed with AML in her 20’s. She definitely has a degree in journalism or something because it is written so eloquently. She pretty much nails what I am going through on the head. Her journey is a bit different than mine but she describes what it is like being a young adult with cancer. You are caught somewhere in-between, not a child but still figuring out how to be an adult. She describes what it is like to almost be an outsider in your own life. I guess having cancer changes your perspective on things. My mom told me “You will be a changed person”. I already feel changed; my life was turned upside down in a matter of seconds. I asked Chris one night – How do you go back to “normal” life? I am told you find a new normal. So that is what we will do, we will find a new normal. We will take one day @ a time and continue along on this journey one foot in front of the other.

Till next time…KMS

Day 2:

I am still feeling good! Last night was a long night. My chemo went on throughout the night so there was a lot of in and out and very little sleep. It was out of anyone’s control and necessary. I am hoping to get some sleep tonight. I am not sure who is more tired me or my mom. She spent the night on the pull out “bed” or I think she might call it a rock. I am sending everyone home tonight. I like my nurse and feel comfortable being by myself.

Today wasn’t as busy as yesterday. I had some visitors in the morning then Chris has been here with me all evening. We had some delicious “room service” delivered by a friend. I had a yummy bread bowl from Panera. I have no trouble with my appetite as of yet! I have had no nausea or vomiting which is good. I am taking more medications than I have every taken in my entire life. It is definitely weird being the patient. I am going to have to get used to the role reversal, although it might take some time.

We took our ½ mile walk around the unit tonight. I am trying to stay busy. I feel like I am stuck in one place moving from the bed to the chair. It was nice to get out and have a change in scenery. I am trying to stay active to keep my strength up. I think there might be yoga tomorrow, I am not sure yet. They told me I was allowed to do yoga as long as I don’t attempt to stand on my head or try any crazy moves J

Well I am going to spend some time with Chris and try to get some rest. I will be back tomorrow. I am very grateful to be surrounded by such amazing people. I am truly blessed. I am so thankful for all of the thoughts and prayers.

Till next time…KMS

Day 1 of treatment:

Today was a busy day. I had my egg retrieval this morning which went good. We had a great group of people to help us through the process. We truly cannot thank them enough for all of their support. I will be forever grateful to the APRN who helped me through the process. Not only was she supportive for the medical piece, she was supportive mentally. She was there every step of the way, even to hold my hand during retrieval JShe is truly someone I aspire to become like as an APRN. Tomorrow we will find out how many embryos we have. After retrieval I was admitted to the hospital. I had my echo right when I got to the unit. I then had my lumbar puncture and chemo. I also am starting my IV chemo tonight. I am not sure how long I will be in the hospital. Maybe only 4 days, but we will have to see how I am doing. I am going to miss my Subie! I hope I am doing well enough to go home and be in my own surroundings. I am prepared for whatever I need to do. I did not get my nap in today so I am going to call it a night! But I will blog tomorrow to keep everyone posted. I continue to take it one step @ a time. But we are off on the journey as of today! Fasten your seatbelt!

Till next time…KMS

Today I got my port placed. For those who don’t know what a port is, it is basically like an IV that is under my skin which allows me to get all of my medications without being a pin cushion. I slept through the entire procedure, it went good! I had a little nausea when I got home, but I was able to take a nap and woke up feeling better. I am a little sore now, but no pain. It feels weird. I feel like I am going to pull it out of my neck- which they promise me I won’t JI am sure I will get used to it. Plus once the dressing comes off it will be better. This is one step towards staring treatment. As I always say…one step @ a time.

Till next time….KMS

Yesterday I had my second bone marrow biopsy. This biopsy was for the clinical trial. I have to say, I don’t think it was as bad as the first. I don’t know…maybe I just knew what to expect. Trust me; it is by no means a cup of tea! My labs continue to remain stable and I am still feeling good. I am home today working on some schoolwork. I only have a couple of things left before I finish up for the semester. The light at the end of the tunnel sure is getting brighter! Everyone at Quinnipiac is very supportive of me graduating this May and I have a very good study buddy who will keep me in line J I truly am surrounded by some amazing people. My husband and parents are by my side for everything. I have a personal shopper J and many people sending thoughts and prayers. I am one lucky girl! Well if I don’t get back on before Thanksgiving I hope everyone enjoys their day! Happy Thanksgiving!

Till next time…KMS

So…I am still feeling good and my labs are still stable. Yesterday we had a meeting with the pediatric oncologist, so it looks like I will be followed by two teams. Basically, it means I will have tons of eyes on my case. I will be in-patient for about 5 days and then going for out-patient treatment. Things could change at any time but as always, we are taking it one step @ at time.

Till next time… KMS

Yesterday was our first meeting with the oncologist. It went very good. My labs continue to remain stable and I am feeling good. It still doesnt feel real because I dont feel "sick". I feel like I am going to wake up from this bad dream and return to normal. Life has gotten a little crazy with all of these appointments. As hectic as it seems, I have not had to do anything alone. Chris and my parents have been there every step of the way. We are taking everything one day at a time. As the doctor said "One foot in front of the other". I say one step @ a time. In addition to the appointment I had my first echo. If all goes as planned I will be potentially getting admitted next Thursday (Thanksgiving Day). We will be going to Dana Farber on Monday to get their thoughts on treatment. I continue to pray for my labs to remain stable.

Looking back on the past couple of days....I am not sure it feels real. I am not sure I will ever forget the phone call on Thursday afternoon. I knew something wasnt right. We hoped and prayed for a different diagnosis. Labs were re-drawn and additional testing was ordered. The weekend was the worst so far. There were many tears. I know I am strong, but there are times I ask myself why me? I truly believe God gives you what you can handle. For some unknown reason He thinks I can handle this. I want to tell Him I am way to busy with work, school, clinical..LIFE. But for some reason He has other plans for me. All I know is whatever His plans are...I will beat this. I will walk in graduation and I will go on to tell my story. For now all I can do is remain positive, hope for the best and pray.

God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
As it is, not as I would have it;
Trusting that He will make all things right
If I surrender to His Will;
So that I may be reasonably happy in this life
And supremely happy with Him
Forever and ever in the next.
Amen
(The Serenity Prayer)

Till next time...KMS