The Inertia of the Roller Coaster and the Effect of G Force
It’s been just over a month since I last sat down to write, and so much has happened between then and now that it feels like it’s been much longer than that. I apologize for the length of this update, but I just haven’t been able to write until now. Last time I had the stirring and time to write like this I had just had surgery and had seen Dr. Patel, my oncologist. They (my oncologist and his nurse practitioner) were recommending an outside opinion, as they had never treated a patient like me and were uncertain on how to proceed. It has been the typical cancer diagnosis roller coaster since August- deeply familiar emotional terrain for us. The ride started with the news that I had new tumors on my ovaries, possibly cancer. Doctors’ appointments and tests later, and we had a major hurdle to get through with my surgery. That was immediately followed by the news that the tumors were metastatic breast cancer, with an unknown prognosis but a hope that they “got it all” in the surgery. That upward inertia was mounting with an anticipation about the uncertainty of whether they truly did get all the cancer out, and how we would measure it if they didn’t. From there we learned that my Circulating Tumor Cell count was a whopping 130. The CTC count is a brand new test being used to count the actual number of cancer tumor cells floating around in a specific amount of blood. It’s basically a ‘tumor load’ indicator and is used primarily for prognosis and as a numerical measure of the progress of treatment. This particular test was significant for me because my tumor markers, which measure the chemical secretions of certain types of tumors (but not tumor cells themselves) into the blood, have never been high, even with active metastatic disease. Contrary to that popular e-mail you may have had forwarded to you before about CA125 being the “simple blood test” to diagnose ovarian cancer, tumor markers are simply not reliable measures of the presence or degree of cancer. And with IBC being a sneaky disease that hides in small quantities in the lymphatic and circulatory system, we needed to grasp onto something firm that would give us a measure of where I was at and how I was progressing. Thank God for His Grace in providing me the CTC test through my cancer center, which went ahead with the test even though Kaiser most likely won’t approve payment for it.
Anyway, with the CTC count the magical number is 5- anything above that carries a very grave prognosis. And the peculiar thing about the CTC count is that it doesn’t matter if it’s 6 or 6,000, the prognosis is statistically the same for anyone with a count over five. Sadly, looking at the statistical research validating the test, prognosis is indicated by months of survival, not years. Even though statistically 6 would have carried the same slim chance of survival for me as 130, psychologically, with 6 being so much closer to 5 than 130, I surely would have had much more hope than was delivered to me by that heart-pounding 130. The momentum really sent me spiraling down for a few days, and Al and I had to re-visit some very difficult discussions about living trusts, life insurance, burial plans, my personal wishes and all that. We had to re-evaluate our financial situation, as it seemed obvious to me that if I was truly that sick, it would be unlikely I would be able to go back to work. And that too was a huge leap of faith, because state disability is basing my weekly rate on my highest earning quarter last year. Unfortunately, it seems I was on leave for some portion in every quarter last year, because my highest earning quarter was half of what I normally make as a full-time employee. That meant my disability check was less than half my normal take-home pay. And with our house payment taking one entire paycheck, we felt the loss almost immediately. But we put one psychological foot in front of the other as we traveled powerlessly along the roller coaster track. I had more tests to get through and had to keep my focus on what was ahead.
After the huge, crashing letdown of the CTC count, I anxiously anticipated the upcoming PET scan Kaiser approved. It would be my first one, and I was uncertain about what the scan would show. PET scans are the preferred imaging study for metastatic disease, especially if it’s suspected in micro levels. It’s also the preferred imaging study for IBC in particular, as IBC tends to spread in micrometastatic process. But, my PET scan would prove a dicey situation because having a scan that sensitive (measuring metabolic process) so recently after a major surgery would most likely cloud the window. The body is already working overtime because of the healing process from the surgery. And with the CTC being that high, I was almost certain there’d be cancer somewhere else in small amounts, especially in my pelvis. But I wasn’t sure if the PET scan would allow proper differentiation between cancer process and healing process. Unfortunately, my first experience with a PET scan was traumatizing enough I’m not sure if I will be able to have another one without being sedated- at least not at Kern Radiology. For the PET you are asked to eat a low-carb diet for a period, followed by a period of fasting. They then inject a radioactive glucose-type substance and wait 30 minutes or so and then put you through the machine, head to pelvis. The machine detects the increased metabolic activity in areas processing the radioactive glucose fastest. They call this “metabolic uptake”. No imaging study in and of itself diagnoses cancer, but it does tip off doctors on what looks suspicious and needs further biopsy. Anyway, you spend about 45 minutes or more in the PET scanner, which is a cylindrical tube much like a MRI machine, but shorter. I’m not sure if it was a reaction to the fasting and then glucose-type injection, nerves, the constriction of blood flow from having to remain in the position with my hands over my head for so long, or a combination of all three, but I had a bad reaction towards the end of the exam. I called and called to the technician, but she was not anywhere available, so I ended up having to inch my way out of the cylinder during the exam. It was not a good experience. And I worried, since they weren’t available to stop the machine, if my movement during it would cause it to have to be re-done, or specific vital information would be missing. The images apparently turned out though, as they sent me on my way. That was Monday, October 2nd.
The MD Anderson Way
I was scheduled to see Dr. Massimo Cristofanilli at University of Texas’ MD Anderson cancer clinic in Houston, Texas on October 5th. Dr. C is one of a few experts on Inflammatory Breast Cancer, as I had shared before. And this month MD Anderson is opening an IBC clinic to specifically treat only IBC patients. It is the first IBC-specific clinic in the world, and carries a hope of advancing the research and treatment for this rare and aggressive cancer. Of all the places in the world to go for an evaluation and treatment plan, MD Anderson was the best choice given my current situation. So, it was off to Houston we were headed. And, this PET exam was the most vital piece of missing information I needed to be able to take with me to Houston to present to Dr. C. Besides, I was working fervently to cover as many bases as I could to contain the cost of going to MDA. They required a $12,500 cash deposit just to see the doctor there. That’s money we didn’t have. And Al and I prayed and agreed that if it was truly God’s will for me to go to Houston, He would provide a way financially for us to get there. If He didn’t provide a way, Dr. Patel said he would be willing to proceed in treating me with the best educated guess he could come up with and we’d just muddle through together. But if my oncologist didn’t have 100% peace of mind about proceeding with treatment, I surely didn’t either. And I needed that. But it did come at a hefty price. I had worked very hard and anxiously to attempt to get Kaiser to authorize payment for the medical evaluation I was going to MDA for, but was not able to secure that before we needed to leave on October 4th. It was a major undertaking even getting all the radiological films, reports, pathology slides and tissue blocks, surgical reports, chemo notes, radiation notes, and all that “stuff” from over 3 years of cancer treatment and follow-up that MDA required. Again, it proved to be an anticipatory push up a steep hill against the inertia of denial. I was miraculously able to get results of my PET scan on October 3rd, just one day after I had the PET and one day before we were scheduled to leave for Houston. But I had to forsake an appointment with a Kaiser oncologist in Los Angeles in order to pull that off- my one last shot at attempting to get Kaiser to authorize my visit at MDA. But I wasn’t hopeful of that, as we were scheduled to leave for Houston the next day and Kaiser doesn’t work that fast anyway. As it turned out, God did provide a way for us to go, as my parents offered to give us the cash deposit to be seen there. So we had airfare booked, hotel accommodations, and the whole trip planned- we were to stay from October 4th, returning home on October 10th. MDA had asked for 5-7 business days to complete the evaluation process. Since I was only going there to meet with the doctor, I planned on 3 business days being enough and we couldn’t afford to stay any longer anyway.
So, the day before departing to Houston I obtained the results of my PET scan and the only thing identified was some increased activity in my pelvis, along my incision line, and a highly metabolic lymph node in my supraclavicular chain on my left side (collar bone/neck). The incision line activity was totally predicted- I had only had surgery less than a month before, so I was still healing. And the ‘hot’ node in my neck was a bit unpredicted, but I wasn’t worried about that as much as perhaps I should have been. Being that it was on the opposite side as my original cancer, and far away from my pelvis, and on the same side that I had a blood clot, in my mind I just didn’t assume it was menacing. No increased activity was seen anywhere else in my body, so I was hopeful that maybe they did “get it all” and all that was left was floating around in my bloodstream and we could get that under control before it rooted itself somewhere else. So off to Houston we headed, again on an upward climb, getting through the stress of airports, unknown freeways, and all that. My parents had come through with offering the $12,500 deposit to get into MD Anderson, so it seemed clear that was our best option and that God’s provision was our signal to move forward in that direction. My step-dad came down and stayed at our house, watching the kids for the week we would be gone, and I invited my mother to come to Houston with us so she could hear and see first-hand what the doctor had to say. I needed her to be there. So we feverishly finished up all last minute plans and gathered records for the trip. We arrived in Houston on October 4th with no problems. We found our hotel and checked in, tired from the trip. We got up early Thursday morning to make it to the cancer center for my 8:00am appointment. We provided the deposit to the cashier in expectation that they would only be utilizing a small amount of that money, I would see the doctor, get a recommendation, and come home, the balance being returned to my parents. So I met with Dr. C’s nurse practitioner, Lisa, and then with Dr. C. It was a wonderful experience and both of them were very cordial, intelligent, and professional. MD Anderson overall was a wonderful experience. The cancer center’s outpatient building alone is 7 stories, with the breast cancer clinic consuming an entire floor. There was a full cafeteria, gift shops, chapel, social work department, pharmacy, crystal clear salt water fish tanks on every floor, wireless internet hookup, computers for patients in waiting areas, automatic filtered water dispensers in the waiting areas, and even a live harpist playing. The people there were some of the most hospitable I have ever met, being a native Californian. Dr. C is Italian and very soft-spoken. We all had a difficult time even hearing him, as he spoke so softly. He answered all my questions, as did Lisa before him. MD Anderson was one of the facilities involved in the initial studies on the Circulating Tumor Cell test, so I knew this was a good opportunity to ask about that- I wanted to know if that elevated number could be a “false positive” and also wanted to know if they could identify tumor cells in the blood, if they also had the ability to pull them out and then test them with various chemotherapies to see what might work best on my particular cancer. Dr. C shared that they are working on that technology now, but it isn’t quite there yet. He also felt certain that the 130 count in my initial test was falsely elevated because of my recent surgery. Apparently the test picks up epithelial cells as tumor cells, and epithelial cells are found throughout the body, such as in the skin. So it was likely that because of the invasiveness of surgery, all that extra cellular debris was being carried off through my lymphatic and blood stream, elevating the CTC count. Dr. C was certain if the CTC was tested again it would be much lower that 130, but he was also certain it was most likely to be more than 5- I did have metastatic cancer and it could have only gotten to my ovaries through my bloodstream. So really, although he didn’t say it, he was expecting my prognosis to be the same. But we agreed to have the test re-done anyway, because, who knew? It could have miraculously been less than five. Dr. C also wanted to order additional blood tests for a full workup, as well as some imaging studies. Because my PET scan showed a hypermetabolic clavicular lymph node (who knew we had lymph nodes all over our body?), Dr. C wanted to rule out metastasis to my brain, and I hadn’t had a brain MRI in nearly 2 years. So he ordered an MRI. He also wanted to do a repeat CT scan of my pelvis, abdomen, and chest so that we could see more clearly what was going on post-surgically. And, he wanted to look more into the lymph node at the base of my neck- an ultrasound for that. It quickly appeared that I wasn’t getting out of there as easily as I had thought, and that there would be little, if anything left of the $12,500 deposit my parents provided.
So immediately after the appointment I was taken for a blood draw. Seven vials were drawn. I had a brief break to eat before returning for the brain MRI, which was followed by the CT scan that evening. It was a long, exhausting day. But I must say, those were the best experiences of being scanned I have had yet. The MRI tech talked to me through the entire scan. And when you’re pushed into a narrow tube, a plastic cage-like device placed over your face as your head is tightly cradled, and you’re asked to lie there for 30 minutes without moving, it’s very comforting to have someone talking you through it. They even provided me with a plastic, squeezable ball to hold in my hand so that if I needed anything I could squeeze it and it would signal to the tech I needed something. The CT scan was also different than what I had ever previously experienced. At MD Anderson a pelvic CT requires a barium enema, so that was one difference that was not as welcomed. But overall, the experience of even the CT scan was much more positive. The machine itself has round smiley faces that can be easily viewed by the patient- the faces light up signifying, along with the verbal directive, when to hold your breath and when to breath. Alongside the faces is a countdown of how many seconds to hold your breath. It’s amazing how much that simple, visual, numerical countdown eases the anxiety of the exam, because I found myself able to focus on that countdown and say to myself, “I only have 5 more seconds of holding my breath, I can make that”. In my previous CT experiences I haven’t had that, so when I was told to hold my breath, I did, but without any indicator of how long I would have to do that. We’ve all held our breath and experienced that instinctual panic that comes at a certain point when the body is signifying that it needs more oxygen. While the basic physiological response doesn’t change, that little numerical countdown did decrease my anxiety, which in turn had to have had a countering positive effect on the physiological response. I left that evening amazed at how the small things, even the concern and gentleness of the technicians, made such a difference in my mental coping through the imaging studies. I couldn’t have gotten through all that poking and prodding in a single day without it. So, a long doctors appointment, 7 vials of blood, an MRI of my brain, a full CT scan, and we called it a day.
Coming out of what felt like a series of roller coaster loops, I returned to MDA the next morning for my ultrasound of that lymph node. On the way up to the fifth floor someone who worked at the facility shared that Sheryl Crow would be making an appearance at the breast center that morning- she was there to meet a doctor that Lance Armstrong has been working with in advancing the issue of cancer research in Washington. She came when I was back having the ultrasound, so I didn’t get to meet her, but mom got her autograph on my issue of CURE magazine and Al got a picture with her. I must honestly say that I don’t have a lot of patience with celebrities that become the “voice of cancer patients” simply because they’ve been touched by it. Sheryl Crow did have early stage breast cancer, was able to cancel tour dates and financially manage to be able to focus herself entirely on her cancer treatment, which didn’t entail anything near to what I have been through. She certainly doesn’t speak for me. And I know some people, like Lance Armstrong, have been through more grueling treatment regimens. But even then, I know that Lance Armstrong didn’t have to sit for 2 hours past an appointment time, or find himself lost in a bunch of bureaucratic red tape preventing him from being treated at the best cancer center in the country. So I’m not impressed by celebrity cancer survivors. But it was a nice distraction for Al and mom, as they anxiously waited for me to come out of my ultrasound. Anyway, I went back for my UTS. I was told by the tech that she would do the exam and then the radiologist would come in and also do an exam. A female MDA employee who transferred to the UTS patient reception desk (a receptionist) observed through my exam- every employee at MDA seems to go through empathy training, and it shows. So, nothing extraordinary was seen except two enlarged lymph nodes at the base of my neck on my left side. The radiologist came in, also did a brief UTS exam of the nodal area, and decided the largest node needed to be biopsied. After I signed a consent, the radiologist did that immediately, right then and there, using the UTS to guide the needle directly into the node. He prepared the slide and asked me to wait for the results as they hand carried the slide next door, where pathologists waited. While I waited, still under the tummy-rumbling effects of all that barium from the previous evening, my mother and husband somewhere on the other side of this interior labyrinth I was in, I tried to call to let them know why I had been back there for an hour and a half, and why I needed them to find me. I couldn’t get a sufficient phone signal to get through. In between that waiting period the radiologist became so excited at the sight of my tattoo that he asked to take a picture of it. He said he had never seen anything like it before. I was honored that he would see the beauty and creativity in it, so let him snap his photo. Minutes later he returned to tell me that I had cancer in my supraclavicular lymph node. Crap! I didn’t even cry, don’t even think I batted an eye at the news. But the freefall began, and my heart sank with it. I knew this meant chemotherapy for certain. And now I had to go out and tell my awaiting mother and husband the news.
So we left MD Anderson that Friday morning, visibly shaken, I’m sure. We were heading into a long day, a long weekend. The tests were finished and I wasn’t scheduled to return for the follow-up with Dr. C until the following Tuesday afternoon. We had to change our return flight from Tuesday to Wednesday, as the only time I could see Dr. C for the follow-up was Tuesday afternoon. It was a long time to wait for the results of the other exams and to hear what Dr. C would recommend. But on our way out of the cancer center I passed an African American woman, obviously a medical employee with her long white coat and her name tag dangling from it. We made brief eye contact as we passed one another, and I could see in her face an instant change in her self-absorbed demeanor. She turned around and said, “excuse me, are you a believer”? I confirmed that I was, I am. So she came over to me, leaned into my ear, and whispered a Word from the Lord to me. She told me that God had a message- that He wanted me to know that I am not alone, that I need not be afraid, that I would go through treatment and to not believe what the doctors say, but believe that I will be healed, and that He would be with me every step of the way. Feeling the full effect of the G-force, we parted ways, me in tears. I had a few loose ends to tie up while we were at the cancer center, and we went about our day as much as possible.
Overall, Houston was a good experience. We had the opportunity during the days in between my follow-up appointment to ride the metro rail through downtown Houston. We also enjoyed a free meal at a trendy downtown restaurant, as mom’s neighbors have inside connections there. I remembered when we were in Houston that my graduate school mentors had moved there and were now teaching at University of Houston, Downtown, so I e-mailed and was able to set up a dinner with them. I hadn’t seen them since 1997, so that was an unexpected highlight of the trip and I really enjoyed it. We also drove to the Louisiana border and stopped at a rest stop to walk through a swamp. I saw the biggest spider, short of a tarantula, that I had ever seen in my life. On Monday we went to NASA’s Johnson Space Center and took a tour of the facility. From there we went to Galveston to feel the warm water of the Gulf of Mexico touch the Texas beach. We really tried to make the best of our time there and to at least achieve the blissful effects of weightlessness for a few moments along this long and scary ride.
We returned Tuesday afternoon to meet with Dr. C. The various tests and services I had received consumed all of the deposit that my parents had provided on my behalf, and we were asked to give more money before seeing the doctor. Again, the cumulative G-force experience of the ups and downs of the roller coaster overtook me and I was completely overwhelmed with the emotional burden of the reality of having to return home the next day to face more cancer treatment and an uncertain future, which likely entailed me going back to work. It was this day when this ride we were on, I was on, began to feel more like a merry-go-round and less like a roller coaster.
Centrifugal and Centripetal Force: The Propulsion Towards Center
Last Wednesday, October 18th, was Al’s birthday. He turned 32 years old. He got the usual and customary cards in the mail, wishing him a happy day. He also got his usual and customary annual card from his sister-in-law (his brother’s wife). Al and I have been married over 7 years now and neither me nor the kids have yet to receive a single card from her, but she so faithfully sends him a card every year. Under ordinary circumstances it’s an irritating slight that I would soon forget, like I do every year. And under ordinary circumstances, Love would compel me to protect those who trespass against me by covering over their sins. Indeed, the first go-round we had with cancer I left a good majority of this type of thing out of my writings. But right now, at this time, for whatever reason, God has placed me and my little family on a merry-go-round. And as it spins faster and faster, the force is shaping and changing relationships around us. This merry-go-round experience isn’t as unique as I wish it were, and so, our Pastor urges me to write about it. Perhaps my courage in honesty may help someone else going through it not feel so alone.
Remember those playground merry-go-rounds that we all used to love spinning around on as children? The centripetal force would push us towards the center of the merry-go- round, and we could safely stay there if we wrapped our arms around the center column and held on. But likewise, the farther out we were on the edges of the circle, the stronger the centrifugal force was trying to throw us off the merry-go-round. We would have to hold on to the bars just to keep put. And along with the laws of physics that we exercised in our merry-go-round experiences, there were also variations of human perception- the closer we got to the center, the faster it seemed we were going, but the more focused we were on the immediate around us, and thus, the more our brains seemed capable of overcoming the dizziness. It was always when I was on the outside of the circle, spinning wildly and wildly around, no single point of focus, that things became blurry and dizzying. And that is when my equilibrium would become most challenged, and the centrifugal force would overtake me, throwing me off the merry-go-round. They have for the most part completely done away with the playground merry-go-round. Too many children were getting thrown off and injured.
So the trip to Houston was both essential and unforgettable, and certainly was within God’s plan. I met with Dr. C for the final follow-up, and putting all the pieces together, it appears I have metastatic disease in some lymph nodes in my neck, some nodules in my pelvis that are suspicious for cancer, and that my Circulating Tumor Cell count is still high at eleven. The full prognosis will not be in view until after two cycles of chemotherapy. If my CTC is still above 5 I will most certainly fall into a category of ‘terminal’, wherein any treatment will be given for the singular purpose of extending my life (by medical standards anyway). If it is below 5 I fair a much better prognosis (in terms of months of survival), but still fall into a category of Stage IV cancer (well, not technically as I’m still really Stage IIIc with metastatic recurrence). Dr. C would only comment that my prognosis is “not good”, but he did provide hope in that soft tissue responds to chemotherapy more readily than other tissue. And he armed me with a full two-cycle regimen to take home, after offering me to participate in the Tykerb trial there at MDA. I can’t stay in Houston. I neither have the resources, nor the money. So I trust God in that.
But things took a perilous turn for the worse after that appointment, as my mother and I had a harsh exchange of words that resulted in her being overcome by centrifugal force and getting thrown from the merry-go-round. People who do not know the depth or degree of interpersonal conflict that my mother and I have waded through in my 33 years of life might want to restore her to her place on the merry-go-round by assuming that we’re all under stress and are all reacting different ways. There’s no denying that. Grief and fear do strange things to people. I know. And surely my mother is experiencing grief and fear. But sadly, these types of conflicts and their central themes are nothing new to my mother and I. Long before cancer we were having this same unresolved conflict. And it’s not that this time seemed particularly worse than all the others. It’s just that this time I saw her get flung off the merry-go-round and it feels so much more permanent to me now. We didn’t speak to one another during the entire trip home on Wednesday, and we haven’t spoken since, except for the very nasty and accusatory e-mail that she sent me. I find it more than irony that a month ago He was working on Matthew 10:37 in my heart, and this month the proceeding verses (34-36) have become a reality as well.
Through the forces at work on our spinning merry-go-round, I have also seen Al’s parents get thrown off. The week before my hysterectomy his mother moved, leaving his father behind, to Pennsylvania to live near Al’s brother (the sister-in-law who sends cards to only Al every year). The move was spontaneous and not particularly planned. It didn’t seem to matter to her that we may have needed her help as I laid in the hospital for several days. Al’s father reluctantly followed her to Pennsylvania, leaving the weekend before we left for Houston. Al’s older and only full sibling also moved with their mother. So Al is left with no familial support system either. And it was particularly painful to him that his mother didn’t even call to see how I was doing, or how he was doing through all of this.
One thing I have learned from merry-go-rounds is that being at the center is always the best spot to be in to avoid injury. It’s the sturdiest spot where the forces at work are nearly equally countered, and where the best grasp can be attained. So, as the merry-go-round started spinning, I quickly moved myself to center. And Al is right there with me, as are the kids. It’s amazing to see my little family function this way, to move towards center, and I know that is only because the pillar at the center is Jesus Christ. He is drawing us, compelling us nearer through this, and we are closing ranks. Those who have been thrown off have been thrown off, but it’s been entirely an act of God and not by my pushing them off. In the end, when the reality of “terminal cancer” has so completely humbled us, we see what, and who, is left standing with us. It has been a time of harvest, where a separation has been occurring, and I suspect things will never be the same in terms of our relationships with in-laws after this.
I don’t use that word “terminal” lightly or without regard. I know full well what it means. In the past few weeks we have had to embrace the reality I’m likely to die from cancer so that we could get past death and move forward to fight for life. Only God truly knows the number of our days, and so I do refuse to accept that I am dying of cancer until my oncologist has tried every chemotherapy he can give me and cancer has overtaken me. Until he sends me home with no more treatment left, I will fight. And even then there is hope. But today I still believe that I can beat this thing. Only He knows what His will is, and because He is spinning me towards the center, I am at a much better place to submit myself to His will than I was one month ago. It’s just saddening that the centering came with a sacrifice.
I must share that as alone and unsheltered as it feels with the five of us holding on tightly at the center of this spinning wheel, God has been so faithful to meet our needs through people other than those we expected to be there for us. There are still people on the merry-go-round with us, who are intent on holding on and aren’t easily thrown off. There are people, and they know who they are, who have been faithful to help out in our time of need, and who have done so in obedience to God’s blessing, not anticipating anything from us in return. They understand that right now we are centering and our singular focus is the immediate in front of us. And there are still multitudes of people who are praying, who are letting God use them to bless us and keep us centered. The people at Al’s company have been so understanding this time around, and the people at my work have been exceptional, donating hundreds of hours of sick time so I could get through this treatment without the worry of having to go back to work right away. They’ve also been bringing dinner every night for the past couple of weeks and are working hard on fundraisers to help meet our financial needs. We have a great amount of debt and still owe MD Anderson a good chunk of money. We’re planning on picking up additional health insurance for Al and I through his employer as well, as my insurance has proven to not be sufficient to meet my current medical needs. That will be an added expense. But the point is, God is definitely making it known that He is at the center of all things, and that it is only by His Hand that our needs are met, according to His will.
Finding the Net Force
So we returned from Houston with a lot on our minds, and had to let go of a lot to get back to center. It isn’t easy watching those we love get thrown off, especially when we have to also let go of expectations we had of them being able to hang on. But, the real battle was about to begin and we, as a family, had to stay close. Thursday, the first day back home, I had three appointments that ended up consuming my entire day. I don’t think people who haven’t been through this may realize just how much cancer treatment consumes one’s life. We spent another full day on Friday meeting with Susanna, Dr. Patel’s nurse practitioner and preparing for impending treatment. I came home from Houston armed with a treatment plan: Herceptin (a targeted chemotherapy for those HER2 positive), taxotere (a taxane made from the bark of the Pacific Yew tree that acts by stiffening cell membranes so that it is more difficult for them to reproduce), and carboplatin (a platinum-based chemotherapy that alkalinizes the body). I was to get all 3 chemotherapy drugs together, every 3 weeks. Of the 3, carboplatin is the only one I had not had before. This was going to be a rough regimen- 3 chemotherapy drugs at one time. I am to have 2 cycles of this regimen and return to MD Anderson in late November for complete re-staging. If there is no change, or an increase in cancer or the CTC count, we would change protocols. In a few months a new drug, Tykerb, will have passed FDA approval and will be available for women with metastatic HER2 positive breast cancer. This drug is showing even more promising results than Herceptin. Tykerb (lapatanib) is in a pill form. And I know I can hold out a few months until it is available to me without having to go to MDA to get it. While the recommended protocol has some features that make it different than that ordinary practiced at my treating cancer center, Dr. Patel agreed that it was best to proceed exactly as recommended by Dr. C.
And that’s what we did. The following Monday, October 16th, I had surgery for port catheter placement. I chose to do that under local anesthetic, as I would rather endure the anxiety of the surgery than be put under anesthesia. The surgery was dicey, even though I had an ultrasound the previous Friday to make sure the veins were clear. My previous blood clot closed off flow in my left neck/chest area, and the right side has been severely damaged from radiation. Also I have no viable axillary lymphatic system on the right side. But we went for it anyway, and my surgeon decided to try again on my left side, where I had previously had a blood clot from the port. But it turned out that my surgeon couldn’t get the port in. There was an obstruction in the vein and he didn’t want to force the line through the vein for fear he might dislodge a clot, which would be detrimental, maybe even fatal. So he closed up the two new incisions I now had, with no port placed. That took all day Monday, and from the hospital I rushed to the cardiologist to have my pre-chemo echocardiogram. Immediately after that we went to eat dinner- my first meal of the day. During dinner it became apparent that I was developing a hematoma where my surgeon had attempted to put the port, so we went back over to the hospital, where Al dropped me off so he could take Jared home, and I waited for my surgeon to come out of surgery so he could look at it. By the time he had seen me it had stopped bleeding and was dissipating into my chest. Al and I didn’t get home until after 8pm that evening.
The next day (Tuesday afternoon) I went in to the cancer center to proceed with treatment. We (the treatment team) mutually decided we couldn’t wait for port placement and the risks associated with infusing chemotherapy straight into a vein would be worth the chance considering I had not had one drop of treatment since known metastatic cancer was found in my body. We had to break this first cycle up into two treatment sessions though, as Herceptin is given in a loading dose the first time, before it is administered in a maintenance dose. The loading dose of Herceptin I was prescribed was a whopping 825mgs- way too much to be given with any other chemo. So my 90 minute infusion was more like 4 hours, and I pretty much just came home at 5pm and jumped in bed. I nursed a 102.5 fever throughout the night, and got it to break by morning so I could get up and be at the cancer center by 9am. On Wednesday, Al’s birthday, I went back in for the remaining two chemotherapy drugs. Because certain chemotherapy drugs are given with steroids to prevent the body from reacting to the chemotherapy, the first night of treatment my body is always reacting more to the steroid than the chemotherapy. I get an intense hunger that is more psychological in nature than physical, and that first night I have an amphetamine-like insomnia. I didn’t get to bed until after 3am Thursday morning. Unfortunately, Al’s birthday was uneventful, as I was unable to get away from him to even get a card. He was so sweet about it though- when I woke up Wednesday morning I told him “happy birthday” first thing, and then apologized for it being so uneventful and for me having to have chemo on his birthday. He responded by telling me that me being alive was the only thing he wanted for his birthday. I am so grateful that he’s right here at the center with me.
Anyway, Thursday was a rough day because I hadn’t gone to bed until so early in the morning and only got about 2 hours sleep before having to get started on the day. Thursday and Friday were the only days I didn’t officially have something scheduled, but as it turned out, we spent the majority of Friday at the hospital, as Justin got his hand broken during football practice on Wednesday. We didn’t know it was broken until it appeared to be getting worse and we took him for x-rays on Friday morning. The ring finger bone in his right hand (metacarpal) is downright broken. They couldn’t do anything but splint it with a makeshift cast. He’ll have to follow up with an orthopedic specialist next week. I’m hoping he won’t have to have surgery to fuse it, as it is a break and not just a hairline fracture.
So while Justin’s been nursing his broken hand, yesterday and today have been rough days for me, being hit full force with the nasty side effects of the chemotherapies. I’m surviving in a constant state of nausea, and I can’t tell if I’m hungry or not because I always feel like throwing up. I have an icky taste in my mouth that I can’t get rid of, so it’s making it less appealing to drink much-needed water. I have a low-grade fever that I can’t shake and have that horribly familiar bone pain that’s been keeping me in bed all weekend. Thank God the worst of the symptoms don’t last the entire 21 days in between treatments. The carboplatin is known to be particularly bad on the bone marrow, so I’m expecting it to literally wipe me out within the next week. I’ve been taking supplements to try to maintain my white blood cell counts without having to revert to Neupogen, but it may not be enough to overcome the marrow destroying effects of the chemotherapy. Being that we’re coming in to flu season and I have 3 kids at home, I have to take extra precautions against picking up viruses. So from here I need to re-schedule surgery to have a port catheter implanted. I have been referred to a radiological surgeon, who can place the port using radiological imaging to guide the line past viewed obstructions in my vein. I would almost rather not have a port because of the high risk, but it’s necessary. Also, from here I will go to the cancer center weekly for blood draws, and will return on November 7th for my second cycle of chemotherapy. I am scheduled to return to MD Anderson on November 28th, but we aren’t sure if it will be feasible for me to return there. We’re just putting one foot in front of the other. I trust that God’s will will be done. The next week or so will be consumed with trying to get a port put in, but beyond that I’m really expecting to settle into cancer treatment again. The roller-coaster ride is coming to a slow end, and the intensely nauseating effects of the merry-go-round are also wearing down as we’re finding a comfortable place to hunker down. Overall, things are settling and we’re all gaining more and more peace each day that goes by. We appreciate your continued prayers for us and are so apparently blessed by the outpouring of love and support that has come from the least expected people. God is good.
Always in His Grace,
This is the aftermath of the past week- I have 9 bruises on my left arm and the yellow tinge on my chest is the hematoma absorbing into my body. I now have a bruise larger than my hand on my chest from it.