Monday, June 10, 2019

post stem cell transplant (con't).... and some details



So today I am 194 days post transplant. I can't even lie having a stem cell transplant is THE hardest thing I have ever had to do. 

SO when i was diagnosed with leukemia I was super nervous. First off it's cancer.. who wouldn't be scared?  I had no idea what to think. So many things were running through my mind and to be honest I didn't even feel like I had a chance to take in all the information I was being given, in. 

I started my induction chemotherapy with a very positive attitude. I had seen family members go through chemo before so I was assuming that it would be the same for me. You know, losing my hair, throwing up, not being able to eat, no visitors, being cautious, and feeling like shit. I was pretty much right. But, the difference was I was a mother. My son was 3 when I was diagnosed and I think the hardest thing for me was having to leave him. I had to spend 33 days in the hospital. I was able to see my son only once a week. I am eternally grateful for my sons father and all of our family for making me feel like even though I was fighting for my life my son was happy and very well taken are of. As a mother or parent, leaving my child behind just broke my heart. Not being able to be part of his every day. Missing out on all the milestones he was achieving. Starting daycare, making friends, going to birthday parties. It freaking sucked. The worst part was all the times he cried for me. Face-time is such a magical thing but man seeing my baby cry and begging me to come home was heartbreaking.


May 2017, 5 days after being diagnosed with AML.


After my counts recovered and I was able to go home I had to return to the hospital every other day. The doctor would check my levels ( wbc, rbc etc.) and if they were low I would receive an infusion. Sometimes I needed blood and other times platelets. Usually it took a few weeks for my counts to start to hold on there own. I had to also have four consolidation chemo-therapies. For my consolidation therapy I only had to stay in the hospital for 7 days. After each treatment I would have to go back and fourth to the hospital every other day (again) so the doctor could keep and eye on my blood work. 

It took a few moths but in February 2018 the doctor said I was cancer free. It was like one of the best days of my life. I was so ready for all of this cancer shit to be over and I couldn't wait for life to go back to normal. My summer that year was so amazing. I got to spend very day with my son. I felt like nothing could stop me! In fact right after I found out that I was cancer free was when I first started my blog. I knew what it felt like having cancer and I wanted to help others out that were going through it as well. 




So yeah the summer of 2018 was pretty awesome. I did lots of things with my son and I was so thrilled to have battled and won. 




Things were going great until I started having tooth pain. I had went to the dentist to cap one of my teeth because it had broken apart from the chemotherapy. So about 3 weeks after I had went to the dentist the tooth started hurting pretty bad. (and you know tooth pain is the absolute worst) I remember the day like it was yesterday, we were out on my step-dads boat and all the sudden my face started to swell. Nothing was helping it and the pain I was having was the absolute worst. We raced back to shore so that I could bring Isaac home and I could go to the hospital. Silly me, I went to the hospital closest to me instead of going to the hospital I was treated at. I really didn't think much of it. I thought it was just a toothache. The ER doctor was phenomenal and helped me out so much. He listened to me and had the nurses take blood work. Again I had went to the ER by myself thinking that everything was going to be okay. I was told that because I was not a year out from having cancer I would have to be monitored over night. So of course I was freaking out. My oncologist was informed on what they were doing and was fine with everything until the general doctor got the test results back and there was a blast cell in my blood work. My oncologist was very calm and explained to me that sometimes people have a blast cell in their blood but it doesn't necessarily mean that it is caner. But, to be on the safe side we would schedule a bone marrow biopsy, just to make sure. 



At the hospital the doctor told me that I had a abscess tooth and I would need to go to an oral surgeon right away. However the oral surgeon would not touch me because he was afraid it was cancer.  Luckily I found a wonder dentist, who by the advice and guidance of my oncologist was able to perform root canals on my tooth. I was very relieved but my goodness I was not excited about having to get another biopsy done. Those things hurt so bad. 

A few days after the dentist we had the biopsy done. The hard part was waiting for the results to come back but I kind of had a gut feeling. I guess it was instinct. 

Life went on as normal as it could. My son had started preschool on September 7th and life was good. Until September 11th. I remember the doctor calling me. It was 9:00 am. My son was just about to get on the bus and my phone started to ring. My heart dropped, i just knew. My doctor started off by apologizing to me and I just lost it. Holy fucking shit not again. I remember falling to the floor and sobbing on the phone with my doctor. I couldn't believe I had to start this all over again. 

I was completely devastated the caner was back but the worst part about it was knowing that I had to leave my son all over again. He had just started school and I was going to be gone for who knew how long. 

On September 17th I kissed my sweet boy goodbye as he headed onto his school bus and at that very moment I was so petrified. I was so scared because I wasn't sure if I would ever see him again. My survival rate was 20-40%. AML (the type of leukemia that I have) is the worst kind. Not to mention that leukemia is a caner of your blood and blood runs through your entire body. I literally had cancer everywhere. 

The doctors prepared me to go through another induction round of chemo but this time it was going to be with stronger medication. I was given MEC. A super strong dose of chemotherapy used to help achieve remission. and it did work. On day 14 I had a bone marrow biopsy and it showed that no cancer was present. I was so relieved but the doctors told me that in order to stay alive and possibly cancer free for a very long time I was going to need to have a Stem Cell Transplant. I had never heard of it before and was unsure what the details were but I was not very happy about having any more treatment. 

Again I was up at the hospital every other day for blood work to make sure that my counts were good. Occasionally I needed to have a transfusion. 

My doctor had the transplant coordinator contact me and they got started looking for a donor super fast. My family was unable to be donors because my mom and I have a rare gene mutation that causes cancer and my sister had brain cancer. My father would have only been a 5/10 match and for my doctor that was not good enough. Shortly after putting my information into the database a few donors were found. Because I had already given birth to a son my body had male antibodies engraved into my DNA so they searched for a man that would be a 10/10 match for me. 

About a month after starting Be The Match found and contacted 6 men. Four of the men responded and two went to get blood work done the next day to see if they could save my life. The waiting was the hardest part but soon after the men went to be tested I was told that I had a donor. All I know is there is a young man in his early 20's out in Italy that has chosen to give me the gift of life. 

I had attended a class with my family about how this process was going to work and what we were looking forward to. It was a ton of inspiration but a lot of information. We got booklets filled with so much stuff and guidelines I would have to live by. It was a lot to handle. 

On November 21st, the day before thanksgiving I was admitted into the hospital for a stem cell transplant. To say I was nervous is an understatement. Again I had to leave my son, just 3 weeks after coming home from my induction chemo. I was told that because the floor needed to be germ free my son was NOT able to come up and visit me. I was so upset and it was so close to Christmas that my anxiety played a huge part in my overall mental health. I considered not even having the transplant but I knew it was the best thing for me and my family.  My doctors were amazing and because I wasn't starting chemo on thanksgiving the let my son come up and visit me. I truly needed that. 

On November 23rd at 9 am I started the strongest chemo yet. The goal was to wipe out everything so when the donor cells arrived into my blood they would be able to soak right up. To be honest the first day was pretty normal. I wasn't sick, I actually ate, and I felt like it was a regular day. I don't remember the chemo I got or the regimen I had because I kind of blocked that out. I remember that when the second chemo started was when I was having the hardest time. I had the WORST diarrhea and It continued after I got my donor cells. It was the absolute worst. It felt like bleach and hot sauce combined. It was the most painful experience and it lasted about 2 weeks. I literally ate nothing the whole time. The third chemo I had I actually had a really bad reaction to. My legs ( from the toes to my knees on both legs) felt like fire ants were having a feast on my blood. It felt like glass shards were running through my blood. I was rocking back and forth and begging and pleading with god to take the pain away. I was crying uncontrollably and I was all alone.  It was THE WORST EXPERIENCE OF MY LIFE. 





The pain took a great toll on me. I didn't want to do anything. I was depressed. I wouldn't answer my phone, I didn't even want to talk to my son. It was so hard to convey what I was feeling and it was just easier to cry and sleep.  After about a week of feeling sorry for myself and with the (obnoxious push from the nurses) i started to get out of bed regularly. Holy fatigue. You know when you have the flu your body hurts and feels like you cant even move, yea well times that by 100. My legs were heavy and I had no want to move at all. The staff tried to remind me that the best thing for me was to try to get moving. That I would be out of the hospital sooner if I put my pride aside and pushed myself each day. (I thought I knew what pushing myself was but I was totally wrong). 

Each day I was getting stronger. I had my mind made up that I was going to fight as hard as I could so I would be home for my sons 5th birthday and Christmas. I did everything I was told to do and because I listened (even though I didn't want to) I ended up going home 9 days earlier then expected. Believe me it was hard. It still is. Your bodies immune system is brand new. They wiped out all the energy you used to have and you are basically like a new born learning your body all over again. 

The recovery process from a SCT is definitely not an easy one. I mean there were days I could barely get out of bed to use the bathroom. I wouldn't eat sometimes and once i even had a bit of gut GVHD. The medication regimen is not easy either. I started out with about 24 medications a day. I'm down to about 13 now. 




Its not an easy road, that's for sure. You never know what your day is going to be like when you open your eyes. Will i have a pain free day? Will I be able to keep up with my family? Will i have to be hospitalized today? What will my test results say? Will i get sick from eating new food? Is anyone around me sick? Did I remember to bring a mask? Do I have gloves? Why are people staring at me? These are just a few things that run through the mind of a transplant patient in recovery. Each day is truly different, but each day is a blessing. 

As of today I am 97% donor cells!

Friday, June 7, 2019

talking to your kids about cancer...



As a mother the hardest thing in the world was having to tell my 3 year old that mommy was sick. It was the most devastating feeling. One day I put my son to sleep and the next I was in a hospital bed not sure of what the future would look like. How would I explain cancer to my son? Luckily, there are wonderful websites that helped me out and I would love to share them with you! 


Even though your children will be upset when they learn about your cancer, don't pretend that everything is okay. Even very young children can sense when something is wrong. They will see that you don't feel well, are away from home more often, or can't spend as much time with them as you used to. Children as young as 18 months old begin to notice what's going on around them. It's important to be honest. Telling the truth is better than letting them imagine the worst. Give your kids time to ask questions and express their feelings.(Web Source)

What Children of All Ages Need to Know

About Cancer

  • Nothing your child did, thought, or said caused you to get cancer.
  • Just because you have cancer doesn't mean you'll die from it. In fact, many people live with cancer for a long time.
  • Your child can't make you well. But there are ways he or she can make you feel better.
  • Scientists are finding many new ways to treat cancer.

About Living with Cancer in the Family

  • Your child is not alone. Other children have parents who have cancer.
  • It's okay to be upset, angry, or scared.
  • Your child can't do anything to change the fact that you have cancer.
  • Family members may act differently because they're worried about you.
  • You will make sure that your children are taken care of, no matter what happens to you.
Web Source

About What They Can Do

  • They can help you by doing nice things like washing dishes, cleaning their room, or even drawing you a picture.
  • They should still go to school and take part in sports and other fun activities.
  • They can talk to other adults for support, such as teachers, family members, and religious or spiritual leaders.

How Kids May Act When You Have Cancer

Children can react to cancer in many different ways. For example, they may:
  • Be confused, scared, lonely, or overwhelmed
  • Feel guilty and think that something they did or said caused your cancer
  • Feel angry when they are asked to be quiet or to do more chores around the house
  • Miss the amount of attention they're used to getting
  • Regress and behave as they did when they were much younger
  • Get into trouble at school or at home
  • Be clingy and afraid to leave the house

Teens

If you have a teenager, know that they're at a time in their lives when they're trying to break away and be independent from their parents. Try to get them to talk about their feelings and ask questions. Tell them as much as they want to know about your cancer. Ask them for their opinions and, if possible, let them help you make decisions.
Teens may want to talk with other people in their lives. Friends can be a great source of support for them, especially those who also have a serious illness in their family. Other family members, teachers, coaches, and spiritual leaders can also help. Encourage your teenage children to talk about their fears and feelings with people they trust.
For more information about support for teens, you may find it helpful to share this e-book When Your Parent Has Cancer: A Guide for Teens with them.

Adult Children

If you have adult children, your relationship with them may change now that you have cancer. You may:
  • Ask them to help with making health care decisions, paying bills, or taking care of the house
  • Ask them to explain medical information
  • Need them to go to the doctor with you or pick up medicines
  • Rely on them for emotional support
  • Feel awkward when they help with your physical care
For some parents, it may be hard to ask for comfort and care from their grown children. But it's important to talk about cancer with your family members, even if they get upset or worry about you. Try to include them when talking about your treatment. Let them know the choices you would like them to make about your care, in case you're too sick to make the choices yourself. (See Advance Directives.) Recognize that it may be hard for your children to have this talk and that, like you, they're trying to adjust to your illness.

Here are some books that have helped us!

Link to purchase!
Link to Purchase!



Link to Purchase!
Link to purchase!


Link to Purchase!






Here is a list of websites that offer book selections for children!





  I only hope this may help some of you, who have children, that are going through this illness.












what would you be feeeling???

Being diagnosed with cancer isn’t easy, and unless you have been in that situation its hard to understand. Imagine living your life,...