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