Every Thanksgiving I am reminded of my Thanksgiving five years ago. And ironically, this morning while watching the TODAY Show, I was reminded again. A segment was being aired about two young children who are siblings who was diagnosed with Acute Myeloid Leukemia (AML), the same leukemia I had. Throughout the segment it was stated that this type of leukemia is especially deadly and one that is a death sentence unless you are lucky enough to have a bone marrow transplant.
Hearing those words about AML basically being a death sentence caused another emotional storm. It brought me back to my consult with my doctor after I was told of my relapse. He had stated that because of my relapse, the next option will need to be a stem-cell transplant. I had asked him if I decided against the stem-cell transplant, what would happen? He stated that my remissions would be tougher and if I was lucky to become in remission, those remissions, would become shorter and shorter, until my death. I remember sitting there thinking, oh my god my remission didn't even last a year. And if the remissions become shorter and shorter, I may not even be alive in a year. I have no choice. I don't have time to sit on it because of my type of cancer. It rapidly grows and multiplies within the blood that this decision has to be immediate and it needs to be now. That's when I decided to do it. I need to have the stem-cell transplant. Regardless of the side effects, this is the only choice I have or else, imminent death.
This leads me to where I am now today on Thanksgiving. I had to prepare my body for the transplant. I needed to receive 5 doses of highly toxic, lethal chemo to assure my body is wiped clean of the leukemia cells. It was a scary time because some people refer to this chemo regimen as 'lethal' chemo. Some people don't make it through. So as I'm receiving these highly lethal doses of chemo over a 5 day period of time, Thanksgiving fell on one of those days. I remember my husband and the kids being at the hospital, along with my mom and dad. It was around lunch time and the kids were getting hungry and one of the nurses had just walked in my room with a tray - my Thanksgiving meal or how I felt inside as what could be my 'last supper'. I told my family go ahead to the cafeteria and have their Thanksgiving meal together. I will be okay and could use the time to myself. It was one of the most loneliest times ever in my life. But it was also time I needed. I remember looking around the room and thinking this is not the place I'm going to die. This will not be the place where my family sees me last. And here I am today, blogging about my journey.
My blogging has become so therapeutic for me. More therapeutic than any counseling or therapy. I can just let it all pour out about how I'm thinking or feeling on a particular day. If you've read my past blog posts, its very apparent the emotional ups and downs I have gone through and continue to go through. I am moving on with my life but my experience and my emotions about that experience have affected me so greatly this is the only way I can cope.
So in closing, I am so tremendously grateful for every Thanksgiving. I am not in a hospital bed, alone, eating my Thanksgiving meal. I am here spending it with my family. In fact, before cancer Christmas was always my favorite holiday, but since Thanksgiving has become mine. It's very personal to me and was an enlightening experience that day 5 years ago.
I'm so thankful for today and for my donor, Andrea W. Without you I wouldn't be here. God Bless and I wish everyone a most happy, grateful and thankful day!!!
Tonight I learned another thing about myself. I thought I was comfortable in my own skin. I thought I was accepting who I am now. But what I've learned is that it's all been an illusion, more so to myself than anyone else. A few weeks ago someone had said to me that they didn't recognize me because of all the weight I gained and how big I was. It cut deep, in fact I'm still cut and bleeding from those words. I just want to stay at home behind closed doors. I feel ugly. I feel that my weight is out of my control. It's hard to get a handle on it because of my meds and side-effects from stem-cell transplant. Because of the gvhd in my lungs my lung capacity is only at 48% which limits my activity level. Sometimes a flight of stairs winds me.
I need and want to lose the weight but I feel lost. I feel stuck. Everytime I try to make an effort, I fail because of some damn limitation. Add on to that that I'm partially bald. When my hair grows in its only partially. You can see more of my scalp than hair so I just keep it shaved. Even though the cancer is gone, the rest of me still feels stuck. Still in limbo. Some may think why can't she just be happy to be alive and that those are only small issues but they really are not. They are big. Being in remission doesn't mean that everything is all better and you can go back to living life normally. I will never have the life I once had. I can strive to get as close to it as possible. But Everytime I try there is yet another roadblock.
Tonight I attended an event for a couple.of friends speaking of a product that I could benefit from. And while everyone was speaking of their personal experiences I was putting all my energy into not crying. Everything they were speaking of is what I want so badly. It seems so good to be true but what if it doesn't work for me? Is this how I will be for the rest of my life?
Maybe my emotions are just out of whack because 5 years ago this would be the week I was being prepped for my stem-cell transplant. November 30th will be my 5 year anniversary or as they say in the transplant world, re-birthday.
I just thought I would be more ahead than I am now. Lung and Thyroid issues. Possible cataracts in both eyes. Fatigue and Memory issues. I just want a break. I miss feeling normal. This new normal is difficult to accept. But I don't have a choice. If I don't accept it than it could be worse with me no longer being here. I thouhht it would be easier by now. I just need to learn that just because I accept what it is doesn't mean I have to like it.
I remember the exact time I had to decide whether to live or die. Whether to continue fighting or give up the fight.
Let me give a little background of what was going on at that time. It was the time even before my relapse. It was toward the end of all my chemo treatments and I was living with my mom and dad because the kids were elementary school age which resulted in numerous germs and illnesses they could bring home and I couldn’t risk the exposure. The nine (9) months of chemo began taking its toll on my body. I had been very weak and tired. I was beginning to lose my will of survival by not eating and not allowing my body the nourishment it needed. I was thinking that I really didn’t want to continue with this. I wanted to give up. I wanted all the pain and discomfort to end. I wanted the pain and stress to end for my family. I began thinking it would be so much better if I just let go. Sure my family and friends would grieve but time would heal and they would be able to move on. I could absolutely feel the darkness of the reaper lingering close by. It is one of the scariest feelings ever. So as I was feeling the end was near and thinking these thoughts, my mom and dad wanted me to get ready because they were taking me to see the kids and Isaac. And honestly, I really was not up for it. I missed all of them dearly but internally, I just had made the decision to let go. But I went anyway.
I remember the kids being excited to see me and just not having the energy to be happy. I had it in my head that this would be one of my last visits. I was feeling so weak that all of their excitement and energy was draining me even more and I wanted to cut the visit short. I just needed to be away. I needed time to myself to let go. I said my good byes as if they were my last. It wasn’t until I got back to my mom and dads that I was again thinking about what I should do and began asking myself questions. Should I just let go and allow the cancer to slowly kill me? What will become of Isaac? What will this do to the kids and how will it affect them for the rest of their lives? And then it was like a movie began playing in my head fast forwarding throughout the kids’ lives and all of the milestones and important things that I would be missing. I began thinking about the difficult goodbyes with them crying and begging not to leave me at the hospital. I began thinking of Isaac raising them on his own alone, for a period of time, or until he found someone else to move on with. And while I kept on thinking of more and more things, I began to realize that to hell with this. I am not going to allow any of them to have to go through that or worry about any of that because I am not going anywhere. I realized I am a lot stronger than that and I won’t give in. At that moment, the warrior inside of me took over.
Thank goodness for that warrior inside me because if it weren’t for the warrior I’m not sure how or if I would have survived the stem-cell transplant. I remember laying with Isaac on our bed days before I had to leave for Pittsburgh to prep for the stem-cell transplant. I remember him just holding me and telling me I need to fight, I can’t leave them. It was as if he was trying to give me a pep talk so that I will battle through. And I remember thinking to myself, why is he saying this. I know what to do. I made up my mind the before relapse that I’m not going to let ‘this’ beat me. I’ve got this. I don’t remember if I was convincing or not but I do know that even though I had an army of people cheering me on, praying for me and supporting me, it was an internal battle that only one person could fight.
I fought hard and I still fight hard every day. The battle still carries on and I will remain victorious. It was most definitely the scariest and bravest thing I have ever done.
Emotionally, I have been doing fairly well. But with anything those good days tend to become not-so-good days.
It can be something little that can trigger uncontrollable tears or it can be something bigger that reminds you of a potential relapse and your mind remembers the past and fast forwards it into an 'unknown' future that you actually know the ending to.
The images that are on fast forward in your mind are so real and so scary that the panic begins to set in. In your mind, you begin telling yourself it cannot and will not happen again. But just thinking it isn't enough that you begin talking to yourself and saying it out loud and on repeat so that you can convince yourself that that fear will not happen. You begin to break with tears streaming down your face while trying to catch a breath. And it can't be controlled. It happens at home, or in the car, it has even happened at work.
The fear is real. The panic is overwhelming. Is this normal? Why can't I be stronger? I am trying to remain postive. I make a concious effort to be grateful for each new day and love every moment. But no matter how hard I try, the dark shadow is lurking nearby to remind me of what could be.
Then...June 25, 2009
I was living life in a hurry. Not really paying attention to the important things. Worrying too much and sweating the small stuff. Taking too much for granted.
Now...June 25, 2015
Living life one day at a time. Trying to absorb it all. Embracing all of life that I can. Not sweating the small stuff but appreciating the small stuff. Feeling blessed to be alive.
Cuddling...Hugging...Dancing...Laughing...Loving...Smiling...Singing off key...Living in the moment...this is me and I love me.
No matter how much I try to
remain optimistic, fear always creeps in. I think it’s a result of my past
experiences over the last few years. Usually anytime I allow the positive
self-pep talks, I end up with some rather upsetting news. And any time I go to
a doctor’s appointment thinking it’s just going to be routine, something very
unsettling is revealed. Just like last week. I went to a follow-up appointment
to receive the results of my CT scan thinking if they find anything they will
just switch up my medications and possibly my inhaler. I most certainly was not
expecting to be told they found a nodule in my one lung and that my oncologist
wanted me to see a Pulmonary Specialist at the Cancer Clinic. Yet again, this
really took me by surprise. How many times does this need to happen? Twice now,
my world has been rocked by cancer. This can’t happen again. My kids are
finally getting back to normal and not speaking or being traumatized by those
years we fought and battled cancer. It’s beginning to become our past. The
future is beginning to look brighter. Also, I’m working now and I’m enjoying
what I am doing. I enjoy work and feel better knowing that I’m contributing
financially to my family.
Even now as I’m writing this,
I keep telling myself not to worry. Nodules in the lungs are very common and
nothing to be too concerned about. And once I begin thinking this way, I stop
myself and tell myself to be prepared. Because if I don’t prepare myself then it’s
just going to be that much more upsetting. I begin thinking about the 9 months
of chemo I received upon the week of ‘lethal’ chemo I was given to prep my body
for the stem-cell transplant. I think of the possible damage all of the chemo may
have caused to any of my organs and if this current concern could be a result
of all that. If this is a result of everything, I didn’t think it would be this
soon. I have always thought that any problems would occur much later down the
road, years and many years later, like 10 or 20 years. Not this soon. I haven’t
even made it to my 5-year mark yet of being cancer-free. I must make this
milestone. I haven’t made a milestone yet since my initial diagnosis of cancer
(leukemia). My first milestone should have been a year after my first round of
treatment and I didn’t even make it a year before I relapsed. I was only a few
months away from my year anniversary. And now, here I am, seven months from my
5-year mark and I’m scared that I’m not going to make that milestone.
So here I am again, fluctuating
back and forth with how I am feeling. I really am trying to remain positive but
those thoughts full of fear keep creeping in. I am hoping and praying that
tomorrow I will be posting a ‘follow-up’ post with all good news.
Well according to the calendar, Spring is here. But here in Pennsylvania, we still have a little bit of snow on the ground and now the weather forecasters are calling for freezing rain. Hopefully, this will be the end of Winter and warmer weather will be around the corner.
I am happy to say that this Winter wasn't too bad. I had some rough days of colds, coughs, sore throats and being tired. But overall, it seems each year that it keeps getting better. The illnesses are fewer and don't last as long. Hopefully, I will have a Winter with only a few sniffles.
I just had a regular follow-up appointment with my oncologist and had my regular six month Pulmonary Function Test (PFT). My blood results were good which means there isn't anything alarming that would indicate my cancer returning. So my donor cells are working hard at keeping those cancer cells at bay. However, my PFT test wasn't the best. It showed that my lung capacity has dropped from 68% to 48% which would explain my shortness of breath, especially after climbing stairs or after long bouts of walking, as well as, my occasional inability to take deep breaths. All this lack of being able to take in the right amounts of oxygen could also be attributed to me being tired a lot of the time.
My doctor ordered me to have a CT Scan done of my lungs to get a better picture of what is going on and to be able to determine the best treatment. I am optimistic that this can be accomplished and that I will be breathing freely without those lapses of being able to take a deep breath. I have an appointment next Tuesday for the results and I'm ready to get things moving along.
I am ready for warmer weather, sunny days and breathing the fresh air of Spring!!!
Wow, I'm an emotional wreck this morning. Things have been going really well lately. Other than my usual tiredness, emotionally and physically I'm getting back on track. However this will be the third morning waking up from a dream so great that when I wake up and realize the reality, it shakes me. And it really hit me this morning. It hit me so hard, I had to close myself up in my office at work because it affected me so deeply that I was crying so hard I didn't want anyone to know.
In my dream I had my own head of hair. I can't explain the feeling of how freeing it can be without the wig. Maybe I'm having such a difficult time because I was having a really bad wig day yesterday. When I had my regular oncology appointment last week, I stopped at the wig store at the clinic because I need new stocking caps. Unfortunately they stopped carrying them and began carrying a fishnet-like cap. It less restrictive and is suppose to stay in place. However, yesterday it kept shifting and it was very uncomfortable and my wig was also shifting.
I've become very frustrated with the wig. It looks so fake on me. I miss my shorter style and I miss my old hair. I feel as though I'm mourning it's loss all over again.
This is just one of those weak moments I'm having through this journey post leukemia and stem-cell transplant. And this is the best way for me to cope and process every thing that I'm still going through.