No denying it, things have been tough ever since the bone marrow biopsy & aspiration.
Friday’s procedure left me curled up in a tiny little ball physically, emotionally and spiritually. I was in pain and absolutely petrified of further pain. I physically could not handle anymore, nor could I emotionally.
While writing my last post, I was grieving. Just as I was wrapping it up, several deer wandered into our front yard. It was a sweet moment and the first time that I felt much of anything (especially anything positive) since the bone marrow exam. My husband saw the deer and called me to the window while he quietly put our dog away. I am repeatedly humbled by the love he shows me. When he sees something that he knows will melt my heart, he finds a way to give that experience to me.
I was still in a lot of pain after the bone marrow procedure so I hobbled as gracefully as possible to meet my hubby at a large window where we tried so hard to be very still and silent as the deer were alert to every move and sound. And yes, those deer did spark some feeling in me as I watched them cautiously looking for a safe place to eat grass. Eventually they spooked and ran off, something in my spirit understood that spooked feeling because that is kind of where I lived over the weekend (though my hip prevented me from running anywhere status post bone marrow biopsy & aspiration).
The following day, my husband’s NFL team played. One of his sons came over to watch the game. I was still propped up on all kinds of pillows because my hip was hurting from the bone marrow exam. Aside from his youngest son, I don’t think that my husband’s kids have seen me without make up, jewelry, cute clothes. Well, that day was a different look: layers of fleece pj’s, socks, robes, blankets, zero make-up, as well as an exhausted, quiet persona in comparison to my typical chatty self. Initially all of us were wary about the get together—would it be too much on me? what about my immune system? Well, his son was medicine for my soul that day. In fact those 2 were a great distraction to me. My husband and his son cooked brats and managed just fine on the food prep. And his son went the extra mile to make sure he did not bring in loads of foreign antibodies.
While the 2 of them cheered for this team I married into, I enjoyed getting lost in an abstract, darker version of a normal day that would have occurred prior to illness.
Yesterday I saw my gastroenterologist, Dr W. whom I treasure. When I first got sick with chron’s at 29, I was horrifically sick and also allergic to most of the medications used to treat IBD. It was a terrible time for all of us. That was years 14 ago, 2001. I was a younger patient and he was a younger physician. I was in the hospital for months and he was trying everything available, he was consulting other IBD specialists and I continued to get sicker. At one point I remember him asking my parents if they would give permission to send me to one of America’s top clinics for crohn’s and colitis because he had run out of options. God seemed to step in just around that time because I never had to be shipped off to another state.
There was a turning point and I began the very slow, more painful than you can imagine (unless you have crohn’s or colitis) process of healing. I credit God first, then my physician (and I give myself a little credit because I have been a compliant patient). I take the medications the way that they are prescribed, I have altered my lifestyle so that I can rest when I have to (which averts flares), I eat modified diets. It all works together.
Back to my appointment yesterday with Dr. W; he looked sincerely sad yesterday when addressing the fact that the leukemia battle is back.
He looked sad at how ashen and pitiful I look right now because even when sick, I usually look sort of decent. I typically pull it together but these days even with make-up my skin looks gray, my hair is wiry, I am skinny, and I look bad. And I am too tired to really do much about it.
He took the time to show me scans of my insides (from the ER visit a couple of weeks ago) and I was too tired to make my usual pathetic attempts at sarcasm. When he stood up to walk out of the room, he wore a caring and concerned expression.
He knew me before leukemia knew me.
He knows that I am a fighter, he watched me fight chron’s, he saw me get my life back, he saw me get leukemia and even came by my hospital room to visit when I was sick with cancer. He saw me fight to get better.
Yesterday, he looked sad. Then he said “you are going to bounce back…because that is what you do. I will see you here in 6 months and you will be better by then”.
Things are hard right now. I wish with everything in me that the phone would ring. I wish it would be my oncologist and that he would give me test results, a diagnosis, a plan. However there is absolutely nothing that I can do to make this happen any faster than it is happening. The doctor won’t call until he gets all of my test results back.
This morning I looked through old journal entries from my first leukemia battle, trying to remember the time frame of tests/results. I was admitted to the hospital February 2, 2007 (almost at 8 years ago) desperately ill. That is when I met my oncologist. It is also when I had my first (of now 6) bone marrow exams. At that time, I had the luxury of being inpatient, so they sedated me, I had no clue that a bone marrow exam could and would hurt as badly as it does when not sedated. During that hospitalization they started me on a chemotherapy protocol and they did a million tests. I was sent home on that chemo (which made me very sick). My mother and I were brought back to the oncologist’s office on February 6th because “my bone marrow had returned and was ready for discussion”. That is when he told me that I did not have leukemia, to stop the chemo (which was good because that particular chemo was very hard on me). As you can read in this post, I was still clearly sick and we all knew it.
The oncologist then called me on February 13th to tell me that there had been a mistake, that a couple of last tests had come in and that I did have leukemia.…and the rest is history.
Based on that timeline, my bone marrow results must be back. However, some tests are probably still outlying.
It has been 8 years. We have both grown and I am sure that he has had many teachable moments, I suspect that the experience we shared might have been one of them. Which is why I probably will not hear from them until he knows that I am on a specific path. We are hoping that this is just the same leukemia that grew resistant to the chemo I had been taking (and that happens, often). However they have to look at other things such as mutations and other potential diagnoses.
My parents have been extending so much grace to me recently, telling me to rest, to focus on peace so I have been thinking about peace over the recent days.
I have walked these roads before with both crohn’s and leukemia. They are physically painful and exhausting, emotionally draining and it gets confusing spiritually….do I claim life? Is this it? As a Christian, God promises life eternal with Him, but not here on earth. None of us are guaranteed any certain amount of time here. But I want to live, I want to be here, there are so many people I love….however, being here sick is hard. So if God wants me to be here, (and I WANT TO BE HERE), I need to be healthy because this is very hard.
In my recent thoughts on peace, I have reflected on the past battles for my health. I know that peace finally came when I stopped fighting my situation and I recognized that God had me where He wanted me.
Yesterday I realized that I am slightly closer to that place because I felt more alive than I have felt in a very long time while helping a woman who looks, by worldly standards, icky (and that is coming from me, someone who also looks icky right now). She had managed to put on more make up than I had, her hair was better styled than mine but she looked awful (coming from someone who also looked awful). She weighs about 80 pounds (thank you chrohn’s and colits).
I was waiting for an elevator to take me down to the lobby when an elevator which was headed up opened, it was filled with people who were all standing distant from this tiny woman. Keep in mind that I was not feeling fabulous so everything I noticed was hazy, but I noticed. While I continued to wait for my down elevator, the woman was behind me looking at the directory on the wall. I heard whimpering/groaning sounds and turned around to ask if she was alright only to see tears of agonizing pain streaming down her face as she shook her head no.
Again, remember, that I was not at my sharpest or I would have done things better, I would have run for a wheel chair, screamed for help, but I am processing things so slowly these days. I asked where she was going and it so happened that she was trying to get to the doctor I had just seen. I started to tell her that the office was just down the hall and I could see that the thought of making it down the hall was too severe, too painful, too daunting for her. So I walked with her and she cried the entire time. I knew what was happening and I knew that she was in profound pain.
These days my blood cell counts are not so great and I have to be super careful about touching people and things as my immune system is pretty wiped out. Because of that, I was not able to hug the woman as I wished to, but I was able to give her encouragement, empathy and dignity. She and I both agreed that Dr. W is wonderful and would be able to help her. It helps to hear a peer telling you that they understand, that they are proud of you–it makes you feel not alone.
She was alone yesterday and in my heart, I know that God put me where He did because He knows my personality type, He knew that I would respond to her pain and loneliness. I don’t think she would have made it down the hall (upright) alone, and I felt so honored that God picked me to escort her to help.
It made me feel like He still has me here for some reason.
I felt like an instrument of peace and comfort yesterday. I came home and slept because I was sick. People have been asking how I feel. Honestly, I do not feel well today however just knowing I helped comfort another person who was hurting goes very far in giving me purpose these days.
This morning I heard a song that I just love and I tried to find a cool video of it to post but there are not a lot of options out there so the link below does not have exciting backdrops or scenery. I know that some of you reading my blog are not into Jesus or praying but I am, so I am posting the song because I will be listening to it today. The chorus is ~gorgeous~
“for me, to live is Christ”
I have no clue what is ahead of me but I really need to be at peace and I need to have strength to face any of it.
Yes, I WANT to get better. My husband’s birthday is only a few weeks away, I hope that by then I am strong enough to celebrate! I hope that we can go to the beach this summer. There are a million things that I want to do (fun things). And right now I cannot do them, I hope that I get to.
Right now, what I must do, is to get centered and find happiness and peace right here, doing exactly what I am able to do.