This week has been about as trying as the week I was diagnosed. I am glad I can get the first set of scans behind me and hope and pray this only gets easier as time goes on. I think what made it extra difficult was the timing with everything else going on in my life! My job with Porsche ends on June 14th and as the date gets closer, I hear other co-workers talk about their plans whether that be Atlanta or parting ways with Porsche. I didn't have plans....My life is seriously minute by minute day by day. I hate to live it that way, but I had no idea if the scans were going to give me closure to cancer, like they did Thank God, or if I was back to chemo and fighting for my life. I finally can breath and start to plan my wonderful summer with my family and move forward with this trial in New York and eventually start a job search. Thank you God!!!
So most know, I am pretty routine and look for signs where ever I go and try to go through the same motions each time to ensure a positive outcome of a previous experience. So Saturday was my CT scan....My previous CT was done on a Thursday so that was throwing me off. My last CT I wore Navy shorts and a teal tank top (yes I was a hot mess, I had just been diagnosed and had not slept in days and if you remember, it was one of the hottest days of the year, I remember this) Since I realize now that outfit was probably not the coolest in my ward robe and it is also not that nice out, I opted for a blue shirt and gray yoga pants. Maybe it is the blue that keeps my scans clean, right? Next I drove to the hospital and oddly, I remember where Don and I parked that day last June for my CT so I tried to park in the same location. I do not recall what floor of the parking garage, but I do know the area so I found the same area and parked. After that it was a new experience and I reminded myself that this was not last June so some things can not be re-lived. After my scan I tried to get some information from the tech and as she should, she told me she could not tell me my results. I left and re-played in my head over and over the rest of the weekend if her words held any meaning one way or the other.
Monday morning I went back to the hospital, wearing the same blue shirt and gray yoga pants from Saturday (yes, it was washed) I parked in the same spot as Saturday (2nd floor facing West) and went into the hospital to have my radioactive dye injected for my bone scan. Again last year this scan was done on a Thursday and this was a Monday, yes, I wrestled with this all weekend. After the injection they told me I could leave and that I needed to return at 11:30 for the bone scan. So last year while I waited for my bones to soak up this radioactive matter I ate lunch with Don in the hospital cafeteria and then I went to sit outside because remember my navy shorts and turquoise tank top? Yeah, I was freezing so I went outside. Last year I went out to a serenity garden and prayed and prayed and well prayed. I also read a prayer card given to me from a high school friend who had lost her new born son, Evan. When I left the garden last year, I realized I was in a serenity garden dedicated to angel babies. Yes, I still think that was a sign. So back to this year, after the injection I decided I needed to visit the serenity garden. Unfortunately the prayer card from my friend was destroyed when the car was totalled in October and this was bothering me, but I still can go out and pray before I go to work for 3 hours. I walk outside and the garden is fenced off! I can't enter it because of construction! I panicked! What should I do? I have to go there and pray. So since I could not get in there, I walked to the other side of the gate which was actually inside the parking garage and stood facing the garden and prayed. It was super loud with the construction, but I did not care. I needed to keep my routine.
I come to work and I get a call from the Cancer Center from Maria, she tells me my CT is clean! I literally was sitting at my desk in a sitting fetal position. I don't know if you can picture this, but I was sitting in a chair, knees to my chest, hands tucked under each knee (I don't know if I could even sit this way ever again) I was shaking and crying and I tell Maria that I love her and no matter what the other nurses say, she is my favorite. By the way, I do not know who Maria is, but she just checked off one of my scans.
At 11:30 I reported back to the hospital for the actual bone scan. I could not for the life of me find a parking space on the 2nd floor facing West so I went to the 3rd floor and faced west. Don met me there for support. Now just a little background, since December my back aches at different times of the day. Nothing that causes too much pain, but enough for me to notice it. Of course it has always been in the back of my head, what if this is cancer. But it was also in my head that I lift a 20+ pound child several times a day, I do yoga, I run (yes run) and try to squeeze in as much cleaning as I can. Not to mention it could be stress, it could be aging, it could be chemo residual stuck in joints....Several other things that a normal person would consider, but I have thought recently, what if. When we walked into the Nuclear Med waiting room, the tech Carl came to get me. Immediately I recognize him! He was the same tech as last time! HOORAY! This has to mean good news, plus last year after my scan he told me "although I am not a Doctor I do not see anything to worry about". He told me this only after he gave me the technical response that he could not disclose the results to him and I basically looked at him and burst into tears and told him my horrible story.... I have a new born and 4 year old at home, you will tell me my results today! So he did. So I lay down on the table and he asks if I have had a bone scan before and I tell him yes, all the while I'm smiling because I think I get my answers today because he told me last year. So I lay down and the scan goes as usual and after I ask Carl for my results. He tells me over and over he can not tell me. I tell him I have never liked Christmas because I don't like surprises, he won't budge. I tell him I have 2 young children at home that need me....Nothing. I then start asking him would it take longer if there was something wrong, NOTHING! Man Carl, I thought we were buds. Nothing. So I leave there a little defeated.
Monday night Don and I headed to another hospital location at 9:15 for my brain MRI. I have never been to this location so I have no routine to follow. All along I have not been that fearful of the brain MRI because I think to myself if there was something wrong, I would surely know. My only concern here was that my eye sight is horrible. It surely couldn't have anything to do with me aging, having a baby, having 16 rounds of chemo. So we go in to the scan and the tech tells Don that I will be in the scan for about 45 minutes. Off the tech and I go for the scan. So I lay on a table and they enclose my head in a cage looking thing. He tells me to lay there as still as possible and to close my eyes because any sudden movement can cause the test to take longer. So I lay there and the damn MRI noises start up. I mentioned this after my breast MRI, but I can not believe there is not a better system than a stupid MRI. I laid there and said about a million Hail Mary's. I also realized the noises of the machine sound like the beginning of a Black Eye Peas song! They imaged me for about 45 minutes and then injected more dye and scanned another 15 minutes. By the end I was exhausted. Not only was it almost 11 at night but also because of the noise, I didn't even try to break this tech for answers. I just wanted to go home and sleep.
Yesterday I went to work and knew to be expecting a call because the Cancer Center told me Monday they would call after they knew the results. So knowing I was going to get a phone call, it was stressful. Finally around 10, a nurse called me and said my bone scan was CLEAN! I then asked if she had my brain MRI since it was so late so she checked and sure enough CLEAN TOO!! YIPPPEE!! I went out and celebrated with my staff and I think told everyone I came into contact with. including 2 gentlemen at our office to pick up boxes for us! Later in the day I received a call from another nurse with the same news. I told her I had already been notified, but who cares, since it was just a 2nd confirmation that my scans were clean!
Today I met with Dr. Hantel and we went over the trial in New York. He supports me and the decision to move forward with this so I will call the coordinator in New York tomorrow and set up my first meeting to go out and sign the consent and start the process of sending all of my tests, specimens, scans, etc. to their location to pre-qualify me for the trial. Once I am approved and in the trial, I will need to travel to New York every other week for appointments until my body reaches the right levels, then I will be expected to travel once a month and eventually every 6 months. One more test is standing in the way, I have to have DNA extracted so they can study a gene. I'm making the call tomorrow, but I am hoping my insurance will cover this. If they don't, I hope it is not that expensive of a test. I know my initial genetic test was covered, but that was because of my age at diagnoses, I am not sure how the insurance will react since it is for a trial, but we shall see! It feels good to finally be back in the drivers seat of making decisions with my life! For the past year I had to take a back seat and do as I was told. It was very hard for me!
I appreciate all of the prayers and support this past week. Now that they are behind me, I feel such a relief! Thank you all for helping me through them!
Lastly a quote that showed up at just the right time on Monday when I was at the hospital:
"Surrender to what is
Let go of what was.
Have faith in what will be."
Thursday, May 2, 2013
Well a few updates since my last post. The day after my last post I learned that the trial I was going to participate in was cancelled due to low enrollment. I was disappointed and a little nervous because I felt like this was my next step. I pouted around the house for awhile since I was still off due to surgery and then I decided to indulge in a chocolate milk shake. Most know, I have tried really hard to cut out dairy, sugar and fats from my diet. I splurge every once in awhile, but I have never really turned to food during stress so this was new to me. I then got over it because I reminded myself that one arm of the study was just diet and exercise....I can do that on my own, right? Sure I can....(In the garbage went the more than 1/2 drank milk shake) I was not guaranteed a cure, it is a trial. I will get through this. I e-mailed a cancer buddy that I will address later on and asked her if she could offer me some encouragement and I decided move on. Look for the next best thing.
Saturday, 2 weeks ago, I spent some time while Ryan was napping and Justin was watching a movie researching some trials and came across one that is out a New York hospital. The trial is a copper depletion pill that is being offered to breast cancer patients, specifically Triple Negative. The trial is in a 2nd phase and the point is that this pill brings your copper levels in your body to where they should be. I guess they tend to be higher when or if you have cancer. So the trial is looking for candidates that have a high chance of re occurrence (check), triple negative (check) and cancer free (better be check) So I e-mailed Dr. Hantel and e-mailed the coordinator of the trial to learn more about it. Basically assuming my scans are clear, I will need to travel to New York one day a week every other week for 2 months. The point is they are giving you a dosage of the copper depletion pill to get me to a level that is normal for my body. Once I reach that point, could be earlier or could be later, I will go once a month for a 1 day appointment to have blood draws to ensure I am still at the right level. This will go on for 2 years. Count me in!! This was a good day!
Fast forward to last Wednesday, I get an e-mail from the coordinator of the first trial that is local. We may have enough enrollment, if you want in, you are in. Let me know soon. I then e-mail Dr. Hantel to get some advise. I wanted his thoughts on the copper trial versus the diet and exercise trial. I was not expecting him to jump up and down and praise me for finding a cure, but his response was not what I expected. He basically told me that while the copper trial looks promising, it is a very small trial and that he has been around for awhile and knows that these drugs come about a lot and they never get passed as a method of treatment. In his opinion, he would not put his family in financial stress by traveling back and forth to New York.....Thank you very much you jerk! Was my first thought. I was very confused on what I should do. I finally just disconnected and thought the answer will come to me.
Next was last Thursday, I spoke above about an e-mail to my cancer buddy. This is a lovely lady, Jude Borling. She is Pastor Don (he married Don and I and christened both boys) wife. Pastor Don had reached out to me several times during my cancer journey and asked several times for me to reach out to Jude who had been fighting stage 4 cancer for 3 years but was proving to be winning her battle with diet. I didn't reach out to her for awhile because I was shy about it, she had her own battle, I don't want to lean on her. I'll bet being a Pastor's wife, she has to support a lot of people. But after Christmas, Jude reached out to me. We met and talked like we had known each other for years. She was so positive. We both quickly felt a bond and talked about how each of us were inspiring the other. We e-mailed one another and kept in touch. She continued to offer me advise and words of encouragement and I did the same. Well, she e-mailed me around Easter with the news that her cancer was showing back up:( She decided to travel to Bulgaria for a mineral that had some positive outcomes. While she was away, I had e-mailed her a couple of times and did not get a response, never did I think she was struggling. I was confident she was going to return home and let me know she was cured. Last Thursday Don called me to inform me that she had passed away. This was very difficult news for me. I call Jude my hero. She was truly giving me the feeling that I could beat the crap out of cancer. I think what made me sad was I am afraid she was reading my e-mails knowing how much I look up to her and thought she could not bare to tell me that cancer was winning. I was so sad and let down on Thursday. How could this happen to her? To her family? She is a mommy, her kids need her! Pastor Don needs her. I was really bummed, but I know that cancer didn't win, she did! Her obituary said it best, she fought her battle with dignity. Yes she did, she was put in my life for a reason. She helped many people, I am sure of that. I know I am not the only one that lost a hero last week. She had a heart of gold! And while she is not here on Earth to be my hero, she will still see me through this.
So even though I did not get words of encouragement like I had expected from her when I had e-mailed her after the first trial was cancelled, I now have a realization: Who is Dr. Hantel to burst my bubble? I am not putting my family in financial stress to travel to New York. I am out of a job in June, but fortunate enough to have insurance and a pay check through January. This is falling into place....If I had a full time job, would I be able to travel to New York every other week for 2 months? No. Would I be able to leave my kids to go to New York once a month and work full time without feeling guilty that I am not giving them enough attention? No. Do I want to prove Dr. Hantel wrong? YES! So guess what, I am ready to do this trial! I just feel like things are falling into place. This trial was found on purpose by me. I get that not every one would be able to travel like this. But I have the biggest support group: Offers to help with the kids, a best friend that designed t-shirts and that provided us with some extra cushion that we have tossed around what we would do with the money. Now we know. I have one hurdle left....I have to have my scans and they have to be clean.
So that leads me to my request. I have a CT scan on Saturday, Bone scan on Monday morning and a brain MRI (requirement for the trial) on Monday night (9:15pm to be exact) The results will be with Dr. Hantel when I meet with him next Wednesday at 3:00. They are scheduled and now I'm going to try to put them out of my mind until Wednesday. This will be very difficult and I can already tell I'm a little short tempered because let's face it, I should not have to worry about this. But I do have to and they have to be done so what I ask from anyone, please pray for me. I need a sense of calmness as I go through the next week and I need to have CLEAN scans. Please pray for me! And please pray for the Borling family. Jude's life will be celebrated tomorrow afternoon and evening. I know she is at peace and no longer has to try to stay a step ahead of cancer. She won, but I also know how difficult this is going to be for her family, so please keep them in your prayers.