I’m trying so hard not to write until I see Dr. Patel on Wednesday. But, thoughts flood my mind and I have to get them down. So I’ll just write in stages, sort of like a daily diary of my week this week. And I’m not even going to apologize for the length this time………
Today was the last day of radiation. Just like I had shared before, I got a nifty little certificate of completion/appreciation. It is personally signed by all the radiology staff. My skin is looking so much better. One of the tech’s I had become well acquainted with said that the skin damage seems to “peak out”, and then it begins to heal. But the neat little testimony to share about that, is that she also told me that my skin has healed faster than she has ever seen. Even after continuing to receive radiation, it has dulled to a tan with just a couple of spots that have scabbed. I am sure that being young with a healthy immune system has helped my body to heal quicker, but I am even more certain that prayers have been the real factor of my healing. God hears, and He has compassion.
I also had my CT scan today. I saw someone I work with there, as she had a scan scheduled right before mine. I’m there so often I seem to see people I recognize every time I go. So, I await the results of the scan. Last Friday, Dr. Patel’s Nurse Practitioner (not the same one who misdiagnosed my gall stones) called because I had left a message for Dr. Patel. As kind as a doctor seems, the health care system can be very hostile and impersonal, and you really have to be a solid self-advocate to get anything done. Well, getting my CT scan was no different. Because most liver mets are multiple lesions, and hemangiomas are far more common than malignant liver tumors, the doctors seem to want to assume that I have nothing to be worried about. Well, I never seemed to fit in the statistical norms anyway, and certainly not with this cancer. I mean- 1 in 8 women get breast cancer, and of those, only 5% or less have IBC. I think that’s proof enough that my intuition has played a larger role than statistics! So I shared with Dr. P’s NP that my tenacity has kept me alive, so I’m not abandoning it now. I wanted a scan. She conceded that it was reasonable given my case. But she also suggested that a CT scan may not provide a more definitive answer, and that ultimately a biopsy is the only way to know for sure. She suggested that while Dr. Sales is taking out my gall bladder he go ahead and do a biopsy of the lesion on my liver. Sounds good to me- now we have a game plan.
I’ve been reading The Hobbit by Tolkien during the long periods of sitting I’ve had to do in numerous medical waiting rooms over the last month or so. Fiction isn’t ordinarily my choice, but it has been a refreshing escape into another world. There’s a part where Bilbo and the dwarves head off into Mirkwood forest. It’s the shortest path to where they’re going, but incredibly dangerous. The path through the forest is overgrown, and so dark from the dense trees that lean over it, that Bilbo cannot even see his hands in front of him. And once in a while he catches glimpses of eyes, bright green and yellow, peering at him from the brush just off the path. This is very much what the cancer journey has been like for me. There is a stream that runs across the path, although it is a large stream- not one that could be jumped. The gang was warned before entering the forest that the waters are bitter and toxic, and that if the water even touched their skin they would fall under a deep sleep. So they commission a boat that sits across shore, but not without a casualty. Having to carry on hungry, tired, frightened, and losing hope, with the additional weight from having to drag their slumbering companion, they once again begin the leg of the journey, not even seeing a speck of light at the end of the path. The forest is so dense, and the path so overgrown, that they wonder frequently if they have diverted from it and if they are hopelessly lost in the forest. Yes, this does feel like cancer.
I got some news today that made me very sad. They’re posting my position at work. I’m not out of a job, but if someone applies for and gets my position, I will come back to work and be placed in whatever is ‘left over’. What that means is either a position no one else wanted, or a temporary “floater” position (someone who fills a spot while the permanent person is on leave). Boy, talk about humbling. Sometimes… well ok…most of the time…I don’t understand why God does the things He does. All I know is that “He can do all things; no plan of His can be thwarted” (Job 42:2). I have gone from on my knees looking up, to on my knees head in the ground, to a complete prone position…..
You know, in my last letter I was very transparent and honest about my fear of a metastasis. I wanted to clarify that the fear I was referring to when I said I had hidden thoughts about the cancer spreading to my liver isn’t the kind of fear that immobilizes me, or defies faith. It is more of an expectation sort of fear. The kind of “fear” that Al and I both had when God directed us to begin studying Job in our home group right before I was diagnosed, and the kind of fear that sat in our gut as we both knew some big trial was coming. Anxious expectation. Waiting for the ball to drop. Fear. Not that I haven’t experienced the other kind of fear too- the real death-in-your-face fear. Oh boy, have I ever had my share of that! Facing the real possibility that the cancer may have gone to my liver brought the visitor to my doorstep again. But is fear a lack of faith? Or is it just a test of faith? There’s an old adage: faith is fear that has said it’s prayers. And how true it is! Faith isn’t developed in a vacuum. It is forged and tested in the fiery trials of life. And so I hope that through sharing my own trial God has made His authorship of this lady’s faith very apparent, and that my own humanity has not clouded this. I continue to struggle, but I hope that the Holy Spirit continues to bare witness to the submission that only comes through Him. “Though he slay me, yet will I hope in him” (Job 13:15).
I surely have been encouraged by many people who write to me. And yet there are others who do not even read through my letters. Yes they are long. But I am certain that I labor over writing them far more than any one person labors over reading them. And really it is to the glory of God, because I am weary of writing! This cancer cross is not for just my private benefit, although I continue to search for the personal purpose. It has a purpose far more reaching than even in this life, and I know because God is Sovereign and sees what I cannot. Recently a friend recommended the movie “The Doctor”. I rented it and watched intently. What struck me about the movie was the girl dying from brain cancer who told the doctor turned patient that her tumor “had given her new freedoms”. I have not really come to that place of making every day count as if it is my last, because although I have stared death in the face with much trembling, I still in my mind believe I am going to survive this cancer. So all I see is what this cancer (or treatment) has taken from me……….
Today was the first day in 8 weeks that I did not have to get up and be at the cancer center by 8:30am for radiation! I had a lot of deep cleaning planned today, but Al invited me to make the drive down into ‘the valley’ with him, as he had some work to do down there. I hesitated at first- I do have a lot of work to do. But then I thought about what is important (if you saw how filthy my carpet is, that may not be a hard decision). Anyway, I decided to ‘waste’ my day by accompanying him on his drive. We talked about weighty theological things. I read from my new book by Christina Middlebrook (remember I quoted her essay a few letters back?). I researched and discovered that she had also published a book, and although out of print, I was able to obtain a copy. It is a quick and easy read, but because it is so heavy, I can only read it in measured bites. I consumed a little too much today, and ended up crying (which as I told Al, was the purpose of reading it in the first place). Boy, can I so relate to Christina’s experience of her own cancer!
“These days I’m not diagnosing Post Traumatic Stress Disorder. I’m living it…..Oh God, what company the traumatized soldier provides me! I keep him inside my pocket like a talisman. I think he understands me. I understand him. I think of all the graveyards that we have left behind, now that, supposedly, the war is over. I hear the guns far off, raging in the distance- someone else’s body now. Paula’s, Deborah’s, Ricki’s, Ann’s. But cancer, like war, has fallout, like nuclear fallout, and it suffuses every breath I breathe. I think the soldier lying on his bed, staring at the ceiling, declining to sit at the family dinner table, refusing to go out with old friends, is, as I am, trying to figure out how to go on with life, trying to figure out if it is worth going on after the nightmare….. Crowded quarters- tanks, submarines. The bone scanner lowers to a mere whisker above my face. Inside the MRI, where machine-gun noise fires into my ears and makes my skull vibrate, the tube in which I lie is no larger than the inside of a torpedo. A voice from the ceiling- Eisenhower? Schwartzkopf?- during my CT scan bark commands- “breathe”; “don’t breathe”. I comply. They are talking to me, I realize, from the war room, the place where strategy is mapped. They make their plans, scheme their strategies. But *I* fight the war. *I* obey the orders, feel the loneliness and the pain. *I* travel deep inside myself to suffer the indignities, to endure the unspeakable, to dream of my soldier.
He is not a man-soldier, not an officer, or a general, but a boy-soldier, and enlisted man, a grunt. Like me, he is scared, brave, and overloaded with gear. He has been handed a minuscule life expectancy but is too exhausted from the struggle to care. He neither sleeps nor eats. He is tired, impatient, but so determined. I feel the determination down to my knees. I never look back. I never consider other options. I just do what I have to do. What I, what we, soldiers and cancer patients have to do is go it alone. We leave everyone and everything we have known before, discard every plan, change all priorities, and go to join the troops in the chemotherapy barracks. There the others, the short-timers, middle-timers, new recruits who enlisted just months before we did, all the other people with serious cancer, have made an advance patrol. They know the terrain. We follow them, frightened, daring to trust, utterly dependent on what information the scouts can relay back to us. Poison drips into our veins. Radiation scars our lungs. Bureaucracy diminishes us. Impersonality enrages us. We are irritable, wet, cold, seasick, vomiting. We are bad company. Shivering. Sulky. Self-centered.”
What a gift for words she has! I read this and was immediately intimately familiar with it, like hearing an echo of my own voice. I suppose for someone who has not been down the cancer path, it is much like watching the war on TV, or hearing about it from others. Reading this today reminded me of a conversation over the weekend between my Brother, John, and I about his respect and awe for the World War II veterans, and the unique ways he would like to honor them. And then Al and I were talking about making a trip down for a family wedding coming up in May, that happens to be very near to where my Grandfather (a World War II veteran) is buried, and where my Grandmother’s Parents are also buried. I remembered all the wonderful things I miss about my Grandfather. I thought about the 16 year old girl I was, high school drop-out, married with a 5 month old baby when he passed away. I thought about what he would think of my life now, and how life does seem to just get on, and usually for the better, even after the tremendous losses we suffer. Cancer took him too………
I attended art therapy group again last night. We made mosaic stepping stones using broken/snipped tile. It was a large group so the group cohesion was somewhat broken, meaning that we didn’t go too far below the surface. We all just kinda sat and put the pieces of tile in some sort of arrangement that expressed who we are. The metaphor for the group was “putting the pieces together” or something like that. No one really talked about that. And as soon as we were done with our stones, which was earlier than the group ended, everyone left. I stayed around and read a small portion of Christina’s book- part of what I quoted above, where she wrote about going on. I shared that this has been the greatest struggle for me. Going on. Putting the pieces together. I have one foot in as a cancer patient, and one foot in as Aimee, the mom, the wife, the social worker. My perspective a year ago was so different than it is now, and I never would have imagined the scope of the internal healing that cancer begs. I like what HEAL magazine says about its mission: “But when treatment is over, a new life often begins. Being healed is when the spirit and the soul merge with the physical self whether cure has occurred or not. In essence, cure is possible without healing, but healing can happen with or without cure……[our magazize] helps survivors find the new normal after cancer and deals with the psychosocial issues that accompany any transition.” I read things like this and feel so not alone- there are other soldiers out there who are grappling with the same things I am. A “new normal”. What a concept……
Al and I went to Dr. Patel’s today, after picking up copies of my Monday’s CT scan. The CT scan report noted an enlargement of my spleen, but it remains within a normal size. How curious- I have been having pain on the left side. Otherwise, everything else looks normal- no spot of my liver was seen. That seems like good news, but I don’t put a lot of confidence in the radiologist there. After all, he reported from my November scan that my portacathe was redemonstrated, when in fact, I had it removed in October. Seeing things that aren’t there…..not seeing things that are!? So, I’m going to humbly ask Dr. Sales to just have a look while he’s in there doing my gall bladder surgery. I imagine he can tell right away if it is a hemangioma on my liver. Anyway, I gave Dr. Patel an earfull. He listened intently to my complaint that this patient’s medical issues were being mismanaged, and was very proud of myself for being so assertive, even though I sensed afterwards that my failure to articulate the blame immediately on Dr. Patel would result in him passing the buck to his staff. Of a more positive interaction, I was able to share with him that I have been enjoying immensely the art therapy groups I have been attending, and since last night was the last group in this series, I was anxiously waiting for another series to start. I gave him a copy of the poem I had written in the poetry group, and he said he would like to have it included in the center’s new newsletter (Dr. Patel is the owning partner of the cancer center, so although he says he “has no power”, it is his show). So, I guess the good news is that the CT scan showed there is nothing on my liver, but that doesn’t mean there isn’t. It just means that whatever is there isn’t solid tumor mass, but IBC is a lymphovascular disease, so I don’t know how that translates to it’s metastatic process?h
I strongly urged Dr. Patel to contact Dr. Sales to discuss the placement of the port I will need for my remaining 2 cycles of chemo and the monthly blood draws I will have to have for the next 2 years, he says. This conversation is the only thing holding up my gall bladder surgery, as Dr. Sales wants to put the port in at the same time………so I still do not have a date for that. And of the three doctors I have consulted about my gall stones, all of them have said that it has to come out, as there is no effective procedure to dissolve or break up the stones. Funny that God would give you a body part that you don’t really need…….
Another bit of good news came today. Again, I asserted myself by making a call to the Human Resources manager at work to share my concerns about my ability to reintegrate (transition) back into the work environment when I will have a whole new position to learn when I return. (Maybe this cancer has given me freedoms I am just now exercising). It’s hard enough emotionally coming back to work when I haven’t really been able to put the pieces of this cancer experience together. But, the thought of coming back and having a whole new supervisor, a whole new office space, a whole new caseload of 70+ clients, in an uncertain situation was weighing so heavy on my mind. But, they agreed to rescend that posting of my position, which means I will still have my caseload when I return! Oh, thank you Jesus! That was a very heavy weight lifted, and I am so glad I don’t have to sit around between appointments and procedures this coming month, contemplating it……….
Well, Al’s in the valley again today, which means I have an entire day at home by myself with no doctors appointments scheduled! You know, I’ve been off work since October, and believe it or not, days like this are rare. People ask me how I usually spend my days- doctors, blood tests, scans, therapy appointments, filling prescriptions, errands. An entire day to myself with nothing scheduled- I should just flop on the couch and watch movies. But that carpet is begging me to clean it, and I imagine that although the gall bladder/port surgery will be laproscopic, I won’t be up to cleaning the carpets right away. Time is running out, and I am gearing up for that return to work. So, yep, the carpets have my undivided attention this morning. I also have on my list to weed through Jared’s clothes. He has way too much, and most of it is ripped/stained, as Jared has not yet discarded his elementary school boyhood. The problem is he tries to wear this stuff to school, so clothes become a daily battle, and one I don’t have the energy for. So, it’s just easier to weed out……..
Al’s got class tonight. He started school again, and is working towards his B.A. at University of Phoenix. The classes are only 5 weeks long, so it’s very fast paced and focused. The timing doesn’t seem so great- like how much more weight can his shoulders hold? Al reminds me of Atlas, so quietly posed with the world on his back. But, if anything, this cancer has brought into focus for him his own future, and the possibility of me not being in it. The financial concerns. The stability for the children. And, with his company looking to outsource, like so many companies in this economy are, he’s trying to secure his future and make himself more marketable. His company does reimburse a significant amount for his education. God truly is omniscient, and we both believe that we have been blessed with the jobs we have because God wanted to buffer us from the coming storm. We don’t have to look far to see His hand of blessing……….
I’ll write again, and probably not so much, as soon as I have a date for my gall bladder surgery…….
You can live forty days without food.
Three days without water.
Eight minutes without air.
But you can’t live one minute without hope