I have to take the time this morning to sit down and focus myself to write. It’s been almost three months since my last formal writing, and people are starting to ask how I’m doing. I just don’t have the time to do much of anything that I actually enjoy doing these days. But it’s time to write.
It’s been almost a month since we got back from our vacation. We took two weeks and went on a nine day cruise, leaving from New Jersey and heading to some islands (Bermuda, St. Thomas, St. Martin, Puerto Rico). The entire trip kept us in the Atlantic Ocean, so that was a first for us, and a bit more adventurous. We had several days at sea, which was nice too. The highlight of the trip for me was once again getting to see dolphins in the wild (Atlantic Spotted). Marine biologists say that it is extremely rare to see dolphins in the wild, so to have seen them twice in my life makes me feel very privileged (actually, three times as I’ve seen them twice on cruises and once off the coast in Huntington). God speaks to me (not in direct words, but in signs) through such things, so it brought me a deep conviction and reminder that He is with me, even out in the middle of the Bermuda Triangle. There’s something about being out in the sea that I find very spiritual, where I feel a deep peace. So in spite of my physical strain, my emotional and spiritual self was able to rest. Other highlights of the trip came during the days before and after the cruise, as we used our time on the east coast to see Philadelphia, and New York City. We spent only half a day in New York, as we took the train over from New Jersey and took in the experience of visiting the World Trade Center site. Beyond that, New York is not kid friendly, so we didn’t venture out of the WTC site. We spent two full days in Philadelphia and saw the Liberty Bell, Constitution Hall, Lincoln Financial Field (Justin’s a huge Eagle’s fan), and also got to visit the King Tut exhibit at the Franklin Institute and the famous Mutter Medical Museum. Of course we had to try out the Philly cheesesteaks, and boy, that is living right there! So, we did a lot, saw a lot, lived a lot in two weeks, but needless to say, I was exhausted.
My level of complete exhaustion only seems to be growing lately. It’s been since April that I’ve had any type of treatment. My treatment team is saying that I need to be doing weekly Herceptin treatments, but they wanted to check with Dr. Cristofanilli at MD Anderson before they started me on that. Three months have gone by. I needed a break and was sick of chemotherapy, so I didn’t push for more of it. I wanted to at least get through my vacation without any immediate treatment. But as soon as we got back, I had to get more aggressive in reminding my doctor that I’m supposed to be in treatment. That was almost a month ago and I’m still not back in treatment. I had an echocardiogram and PET/CT scans this week, so will see Dr. Patel next week. Dr. Cristofanilli comes back from his absence next week as well, so I’m sure when it all comes together for me next week, I’ll have a definite idea if I’ll be proceeding with weekly Herceptin. There is a new drug (Tykerb) that is working exceptionally well with metastatic Inflammatory Breast Cancer (and it’s in a pill form), but we have agreed to save the “big gun” for another recurrence. If I get the Tykerb now, we’ve narrowed chemotherapy options for the future. In the meantime the side effects of these recent chemotherapy treatments, and probably the conglomeration of all the treatments I have had, have caught up to me. My hair is still struggling to grow back in. I’ve gained even more weight as the result of the Decadron, I’ve battled severe water retention (and am still experiencing it), but even worse, I’ve developed disabling symptoms of neuropathy and fibromyalgia. The neuropathy is in my legs and feet, but the primary and persistent damage to my nerves is in my arms, hands, and fingers. It came on almost overnight and the pain was so intense that I could not sleep at night. I couldn’t use my hands at all. I was prescribed Neurontin in ever-increasing doses and I’m at a level now where it’s tolerable. I’m still a bumbly-fingers, and have difficulty with any fine motor tasks. There isn’t a single day that goes by when I don’t drop something. As the day wears on and the Neurontin wears off, my symptoms increase and render me almost completely disabled. I’m supposed to start an afternoon dose in addition to my morning and nighttime doses, but the Neurontin itself has some disabling side effects and I have to find a balance so that I’m not overly medicated, but not in too much pain. If you don’t know what neuropathy is, it’s damage to the nerves (caused by chemotherapy, diabetes, injury, and other conditions) that causes pain and weakness. The pain is very much like when your foot ‘falls asleep’ and you stand on it for the first time. There’s a loss of feeling, a numbness, but also a painful, prickly, tingly feeling. When it’s at it’s most intense, the pain is a deep ache, like when you hit your ‘funny bone’ real hard. Only, unlike that foot that wakes back up or the funny bone that stops being funny, all these sensations persist. And the fibromyalgia. That came on overnight too. I just woke up one morning and felt like I’d been ran over by truck. At first I attributed it to our new mattresses. When I mentioned it to Al he suggested that maybe it was all the work I’d been doing in moving. But the muscle pain and weakness persisted, and weeks later I mentioned it to the Nurse Practitioner. Fibromyalgia. It can be chemotherapy-induced too. Gee, thanks for telling me. And we don’t know if it will ever go away. Most likely not. And the same for the neuropathy. But I can work through physical pain. That’s obvious. Unfortunately one of the side effects that is most difficult for me is the “brain fog”. Until I did some internet research about fibromyalgia, I attributed this growing sense of cognitive disconnection to the Neurontin. I guess it may not be the Neurontin causing me this ‘waking up from anesthesia’ feeling, but the fibromyalgia. It’s emotionally painful to feel like I’m not “at the top of my game”. I feel dull and struggle to push out of that fogginess that some days seems to want to totally consume me. How much more can be taken from me?
But it could be worse. I could be totally bedridden, waiting my days out with hospice service. And today, as far as I know, I have no growing cancer tumors in my body. I will get the results from my scans next week. In the meantime, I’m hanging on to the last circulating tumor cell count from a couple weeks ago, and that was at a “0”- no identified tumor cells in my blood (per studied amount). So, what do I do? I feel stuck again, like I did when I finished treatment last time. But this time it isn’t an emotional entrenchment, but more of a physical one. Working through my sense of loss, through my anger and sadness with God, finding a peace and sense of purpose in my life, I came out on the other side of that struggle stronger. My mind and heart is ready to go back to work. I really found my place there. Damn, it’s been almost a year that I’ve been off work. And I feel like I’ve been aimlessly drifting since. But my struggle now is in repairing my body. My body, my fingers, my legs, my mind, won’t allow me to perform at the level I need to perform at to be successful at work. My medical leave expires in September, and I’ve already been granted a six month extension. I just don’t know if my body will be ready to return to work this coming September. And yet, I feel like I’m aimless, like I need to settle into a purpose, a reason, to get out of bed everyday. So, with a pause and a big sigh, I have to say that I am again floundering in this uncertainty about the future. And all of this may even be decided for me when I go in to see Dr. Patel next week, if my scans have shown again an increase in cancer activity. That too is forever in the shadow of my thoughts. They just haven’t quite yet figured out how to cure cancer. And stage IV cancer is a serious and terminal matter. It is death. Those who survive and are cured are few and far between. While the number in that group is growing every year, treatment for stage IV cancer is still considered palliative- there is no cure. So I, as well as my doctors, fully expect my cancer will show itself again, which is why I am ordered for scans every three months rather than six. And they’ve removed just about every part of me that can be removed, which is narrowing my treatment options by excluding surgery as an option in the future. They don’t surgically remove tumors on the liver, or in the lungs, and usually not the brain either (if they are metastatic). But my new motto is: “plan for the worst, hope for the best”. All of the reality of my cancer comes out of the shadow when I come across others who are dealing with it. Within this past three months I learned that Pastor Jerel’s wife, Cindy, passed away from cancer. Pastor Jerel baptized me, Al, and the kids, and he also married Al and I. Cindy was still relatively young. She was a tremendous blessing to me when I was going through the struggles in my first marriage. Also this past month a Pastor friend of our Pastor lost a wife to breast cancer. For a few years I have been following Joyce’s treatment through our Pastor, Ken. Joyce was diagnosed in 2003 too, and she went through the high dose chemo/stem cell rescue protocol at City of Hope, which is one that I considered. Although I never met her in person, watching from the sidelines as she walked the path of her cancer, I was deeply affected when she passed. Through every loss I am left feeling survivor’s guilt, I am left wondering if I will be next. And I feel incredibly small to be complaining about neuropathy and fibromyalgia when standing in a shadow of death. I think this is why I have come to avoid writing about how I’m doing- it always stirs up the sediment, knocks down the floodgates, and the tears are hard to stop. But they remind me- I’m still in process, still living, still fighting the good fight, still running the race. I guess it aint really over ‘til the fat lady sings.
And these past few months have been full of life. Amanda turned 15 and will be a sophomore already. She’s already asking about driving. She’s starting to explore colleges too, and plans on leaving home for that. She’s working so hard to achieve it, I just hope her plans aren’t interrupted by my cancer. Justin graduated from high school. He’s currently working as a lifeguard for the city pools again this year, but is now leaning towards joining the U.S. Army. He’s decided that he wants to be a military police, and the Army is offering a bigger sign-on bonus and more money for college. A year ago, when he joined the Marine Corp, that didn’t matter to him. He just wanted to test himself and be among “the few, the proud”. But he had to get out of the Marine Corp anyway because his braces were delayed in coming off. He gets them off later this month, and he can’t go to boot camp with them. He’s just spinning circles at this point, enjoying the freedom from being officially separated from school, having a paycheck, and no rent or electric bill to pay. If he does sign the line for the Army he’ll have to wait until November at the earliest to leave for boot camp because they require he be 19 years old before graduating from the MP school. Hopefully he’ll wait to leave until after the holidays. The reality that our family will never be the same, this time with the five of us as a functioning family unit is ending, is sad. But I also feel incredible thankfulness that I have had the time to see my hard work at parenting start to come to fruition. I just need six more years Lord, until my youngest is ready to start adulthood. Or maybe twelve more. I’d like to be there at Jared’s wedding too. But all we really have is today. Heck, all we really have is this moment. I think when I’m done writing I’ll go give Jared a big hug and remind him of how much I love him. (Today Jared and I are home together, as Al and Justin are at work and Amanda’s at summer school).
So, I’m not any clearer about where things are heading than I was three months ago. And I don’t feel really anxious about that. I’ve been really brought to a place of surrender after much struggle. I hope for future things, but I accept whatever must come. I start occupational therapy this week, and I hope my commitment to working through that several days a week will pay off by decreasing my symptoms. I hope to gain just a little more control of my mind, of my pain, of the usefulness of my hands and fingers. I hope my scans are clear and I can start on my tattoo again- get that finished. I hope to maybe explore some Chinese medicine. I’d like to grab onto something for the future, whether that be through returning to work, finding an active ministry, or something. But I’d like to have accomplished all of this by September, and it’s already mid-July. I still have to learn to be gentle on myself, take baby steps, savor the moment. And at this moment I just don’t know where I’m going or when I’ll get there. But I’m sure I’ll keep writing along the way, so keep reading. I know there’s a purpose.
Always in His Grace~