Cycle 8 On My Way Back

 

 

 

On My Way Back From Transient Amnesia...

Cycle 8

Week 2

For anyone wondering where I have been hiding for the last month or so, all that I can say, is that I have been told that much of that time was spent in the hospital. Through a bizarre set of circumstances, which I am sure must have included planets aligning, I have nearly no memory of my stay. What I do recall, are not so much memories, but snap shots. Until recently, "The last thing I remembered," was not a phrase I could imagine using in conversation. Amnesia was something that I knew only as a worn B-movie, soap opera, or dime-store novel plot line. A three week stay in the hospital changed that, as I lost not only three weeks of freedom, but also three weeks of time, literally.

I must admit that amnesia is more than disconcerting, and can be down right frightening, especially until you understand what has happened to you. Thankfully, a few days after my discharge, my wonderful clinic nurse, quickly picked up on the problem, named it, and found the most probable cause. Aside from having been incredibly ill, I had also been given a drug known to produce transient amnesia in about a third of patients. Amnesia rates increase when patents are given the IV version. I am a member of the lucky thirty percent club.

Once I understood that I had a three week block of amnesia to deal with, the task of filling in a few of the blanks began. One amazing amnesia tidbit, is that memories are not laid down based on importance or drama. In fact, it is the more mundane events that appear to be closest to recall. According to my doctor, and family, it is probably a blessing that I don't have much of a recollection of those weeks. I will admit that the little bit I have been able to pull together has not been altogether pretty, but, I would like to at least be able to give an accurate accounting of my medical condition during that time.

I would also like to be able to put together a list of folks who so richly deserve a thank you. So, if you called, visited, sent a card, or gift, thank you, thank you, thank you. It seems that every day I am learning that someone else did something wonderful for me or mine, while I was so under the weather, and out of reality. I am hoping that those are the memories that will be quickly retrieved. I will not be terribly disappointed if I fail to retrieve memories dealing with dehydration, pneumonia, or C-Diff. I will be more than content to leave those holes unfilled.

Returning home was a strange experience, beginning with becoming reintroduced to the little ones. The newborn had grown like a weed and developed a full fledged personality while I was away. Looking at him those first few days back was surreal, as I tried to remember his quickly changing looks, and reconnect with him. The four year old was a dramatically different story. I hadn't realized how much I had missed him, nor had it registered with my fevered brain, how much my absence had unnerved him. Within days, he had asked me to promise that I would never go back to the hospital. I explained that I would love to tell him that I would never go back, and that I would try my best, but that I couldn't make that promise. He then asked me that, if I did have to go back to the hospital one day, that I would promise to come back home. Although his first request had brought a tinge of sadness, his second request stung and could only result in tears.

I have been home from my amnesia adventure for nearly a month and am only now beginning to feel reconnected. My energy levels are slowly beginning to return, but I know it will all happening it's own time. I am encouraged that I survived the adventure, and am looking forward to what will come next. The week leading up to my crash included my last scheduled full force chemo, which means that there will be reevaluation, and changes coming down the road. My tumor markers are down, but the proof will come with this weeks scans. I am trusting in the Great Physician, and have faith in my wonderful medical team here to help me make the right decisions for the future.

Good News, Bad News, Good News

Day 106

August seems to have rolled on in and right over me. What started out as excited anticipation of my last two major chemo cycles, in an instant, dissipated into thin-air. I had just passionately presented my case for returning to school full time this semester. As I saw it, there was no reason to put it off. I had been living outside of normal for months now, and I was anxious to get back to anything that resembled my old life, B.C. I was certain that I could handle the workload, and although my doctor was noncommittal, and my husband argued against the idea, I smugly believed that I would win the discussion. What was there to dispute?

At my 5^th cycle appointment, we also carried on, yet another conversation concerning reducing the dosage of my most toxic chemo drug. In previous discussions, I had been resistant to change anything that I believed could have possibly been a contributing factor to our forward progress. Why fool with success? I proposed, that since I was the one who had to deal with the side effects, as well as the end results, my vote should carry more weight. I had won the war of words three weeks before, and now, I believed I had even more ammunition. God had been very, very good to me, and thankfully, my latest scans had been encouraging; no new tumors, and those that were pre-existing were continuing to decrease in size. After only four cycles, my new tumor marker numbers were smile inducing, having dropped from a high of close to 400, to a new low nearer 90 . I could never have imagined these results when we began down this path, and I didn’t want anything to stop the roll I was on.

This time however, I was not to get my way. The only up side I could see was that I could accept the logic behind the change. My oncologist was determined to minimally reduce my most caustic chemo in order to spare me long-term implications. His tact was explained, as changing our focus from a sprint to a marathon. He didn’t want me to win the sprint, but loose the marathon due to depletion of valuable resources, such as bone marrow. I could find some level of agreement there. After months of operating with a short sighted view, he was prepared to visit the possibility that we may be dealing with this as a chronic issue, many years from now. I was unhappy with the reduction, but thrilled, and thankful to be thinking that we were now possibly talking in years. 

And so, began my 5^th cycle. We were reducing my harshest drug, but looking farther out into the future. It was a deal I could live with. That day chemo clinic had a happy feeling running through it with a lot of chatter, and laughing going on in the midst of our group poisoning. It was not lost on me that cancer patients, as a group, are an unusually pleasant, caring, and happy lot. Whether it is our common struggle, or the harsh fact that we have all been given a big heads up to the precarious nature of life, it seems that each of them is more concerned by the patient next to them than themselves.

I had worked through all of my pre-treatments, received my first bag of chemo, and was beginning to work on my second, when I began to experience an odd sensation. Something was going terribly wrong, as within minutes, I had gone from light-hearted chatter to struggling to maintain consciousness.  I heard my nurse declare that she could not find my blood pressure, not comforting words to hear as you fight to stay cognizant. I have no memory of my short trip to the emergency room, nor most of my stay there. The fog cleared a few days later, by then, I had become a guest of St. E. The plan was for me to be there a few more days. I could deal with that, but by Sunday afternoon, it became apparent that something had changed. Walking across the room caused extreme shortness of breath, and inexplicitly I began setting off my cardiac monitors. After a seemingly endless night, testing revealed a pulmonary embolus. Add five more days to my stay, two new drugs to the mix, and as the oncologist correctly stated, a lot of paperwork for the clinical trial.

Throughout the entire ordeal, my main concern remained whether I would be able to continue in my clinical trial or whether my detour had violated the study’s protocol. Everyone I spoke to seemed to have another opinion as to whether I could continue. Emails, phone calls, and paperwork literally flew around the world as the determination was made, and subsequently altered, and adjusted. Finally, a week after our adventure had began, I was given permission to restart my trial drug. My understanding is that I may move forward, but can not make up lost time, however, it seems that this may be open to interpretation from the powers that be. Never the less, I am happy to be home, regaining my strength, and settling back into my routine. I cannot thank my family and friends enough for their outpouring of caring, prayers, and support. I am hopeful that we can continue on in an uneventful fashion from here on out. I’ll do my best not to incorporate so much drama into future cycles. Fingers crossed.

Half-Way Home and Happy Birthday Honey

Day 79

I anxiously anticipated the beginning of Cycle 4, the midpoint point of my treatment plan.  With half of the initial treatment behind, April, and the beginning of this adventure, seemed another lifetime away. Already, nervousness was beginning to set in, as I wondered what would come next. I do not enjoy loose ends, and having a plan has been comforting to me.  After a rocky start, where it seemed almost impossible to remain hydrated, Cycle 3 had ended on a high note, and I was feeling good, really good, and ready for the second half to begin; on to the downward slide.

 Starting off early with labs and breakfast, I had finally achieved a comfort level with the process, weight, blood pressure, temperature, oxygen saturation, blood work, visit with the study nurse, and doctor, and I would be ready to settle in for my long day. Preliminaries completed, I looked forward to taking my favorite comfy chair, when out of the blue, I was stopped dead in my tracks. Denied.

Not appreciating some lingering symptoms that I just couldn’t seem to shake, my doctor was cancelling my chemo. What????? His arms, crossed at his chest, spoke volumes. I had seen them before, last week to be exact, and I knew that it was his serious stance. There would be no treatment this week while I indulged him by submitting to additional testing. Overkill, I knew it, and I told him so. The next day found me waking from an anesthesia fog and eating crow. Thanks Dr. B., glad you were insistent.

My unexpected free week gave me a chance to make a quick get-away for a few days of past due girl time. It had been a long time since we had made a road-trip, no matter that this one was short, it felt good to spend two days telling stories and laughing. The only thing that could have made the trip better, would have been if we could have held our getaway at the beach, and included a few more of my sister friends. One day soon I am hopeful that we will all be able to take a much deserved beach fix.

Cycle four finally began after a one-week postponement, and did not disappoint. Five days of rehydration were nearly adequate, but avoiding fluids on the sixth day proved to be a misstep that I will not repeat on cycle five. I am fairly certain that by the time I have finished the course of treatment, I will have it figured out; until then, it is a constant learning process. One week into round four, and I feel like perhaps, I am finally beginning to turn the corner.

This week will see my trial treatment, and a repeat of blood work to measure cancer markers. Thankfully, my labs have looked good so far, and I haven’t needed to venture into the world of transfusions. I am praying that these new results will continue to show that we are making progress beating back this dreadful thing. God has been so good to us through this adventure. I truly feel His grace and know that He hears the prayers offered in my name. I can never repay the indebtedness I feel for the faithful, and their intercession on my behalf. For this, there are no words.

Day 58- Happy to Wear Rose-Colored Glasses

This has been an interesting week. I thought we began with a perfect plan. Dehydration had ambushed me on my last chemo cycle, and by the time I realized what had caused the problem, I was a week into my desiccation. Playing catch up was a tough trick. Determined to avoid the mistakes of the past, this time, I was scheduled up for regular fluid fill ups, before I even left the office on day one. No problem. I am a compliant patient, and was happy (well, maybe happy is not the word) to pack it up, and head back to the office for days two, five and six, before returning for my next treatment on day seven, which would of course, include more hydration.

So much for best-laid plans; even though I took additional fluids for the next 7 days, it was still a bit of a rough go for a while. Happily though, my wonderful friend arrived from the beach with her daughter and granddaughter for a short visit. Their theory; if I couldn’t come to the beach, the beach would come to me. It was a wonderful plan.

Although their visit reinforced my belief that I was seriously due for a beach fix, it also gave me additional incentive to finish up the next half of my treatment. My goal is to be able to make the trip as soon as possible. There is just something so healing about the ocean. Standing on the beach, looking out at the vastness, and down at the incomprehensible number of grains of sand under my feet, have always helped me put life into perspective. There, I know that even though I am as inconsequential as one of these grains of sand, I have a God who knows me by name. In the midst of such amazing beauty and wonder, I am reassured that life moves on, no matter what our temporary troubles, the tide moves in and out, and the waves continue their rhythmic washing of the shore. It is comforting.

Day 44

Ready for more good news? As some of you may know, I am not only taking main line standard of care chemo, but am also lucky enough to be enrolled in a national trial. After meeting the criteria, and being admitted to the trial, I was even luckier to be admitted into the arm that receives an additional biological medication. It is my understanding, that although this is a third level trial, I am the first one in the Midwest to have received this drug. Unbelievably enough, the results of my first follow up scans were amazingly improved. In the words of my doctor,” this just doesn’t happen, but I never underestimate Divine Providence.”

It seems that the bone involvement is stable, which is very positive because there is a lag time between tumor death and bone regeneration, so I am thrilled with stable. But the wonderful surprise was that the mass of the main tumor has shrunk an amazing 75%, and this is only six weeks into treatment.  I am truly doing the happy dance.

There is no doubt in my mind that the Father is behind it all, whether it is through my miraculous improvement in such a short time, or through His intervention with the creation of such wonderful scientific minds that have brought us advances in medicine and science. I simply know that, although I don’t expect this kind of news every time, and I know that the road ahead will be very long. I am truly thankful to have something wonderful, and positive to report today.

 I am so thankful for all of my prayerful friends, and would lovingly ask you to continue on with our storming of Heaven. I am hoping that He will get so tired of hearing my name that He will relent and wipe this terrible thing away. As my doctor said, “wouldn’t it be wonderful if this trial drug just melted the tumors away.” I’m praying for that as it would be a miracle for me, and would be a wonderful advance in science for others to share in. So friends, I am thankful for your past prayers, will cherish your future prayers, and welcome the addition of my name on any prayer list you may have access to. Without prayer and faith, there is no hope, and I am hopeful.

As I start on cycle three of my program, I know that this may be a rough week, but it is so much easier to tolerate knowing that we are seeing success. Whatever I have to deal with now is quite a fair trade in my mind. I thank you again for all of your prayers…. I don’t know what I would do without them or you.

Day 38

Day 38

Day 34 caught me by surprise, as the malaise, that for the last two weeks had been my companion, seemed to fade to something much more tolerable. Out of nowhere, what resembled a normal energy level miraculously returned. It was about time. As far as I was concerned, two or three days of downtime was about as much as I was hoping to give up each cycle, and the exhaustion this round, had far exceeded my self-imposed goal for rebounding.

And so, with more energy than I had had in two weeks, I did the only thing that made sense, and took a much too expensive trip to the warehouse store. I returned home, determined to use my energy flash to cook as much food as possible before it faded. Before I knew it, I had chicken poaching, beef browning, and pasta boiling.  Meatloaf, lasagna, baked ziti, broccoli and chicken casserole, Johnny Marzetti, and Italian sausage with rigatoni and white sauce were wrapped, labeled, and hurried into the freezer. In a frenzy, I had assembled a dozen meals that were then packed away in the freezer for another day when I might not have it in me to cook. It was a satisfying feeling to know that my comfort foods were tucked away, and ready if I needed them. Just heat, and eat, no fuss no muss. What a relief.

It would be day 37 before I recovered from that exercise. Live and learn. I am committed to doing what I can when I can and not beating myself up about it if I don’t have the energy or desire to complete a task. Today’s goals were partially achieved, and that’s quite all right with me. A little at a time, inch by inch; this may be a game of four steps forward and three steps back, but it will still be forward progress. I’ll take it, and relish it, because no one knows what next week will bring. On tap are follow up scans, and the beginning of cycle three. It’s amazing how quickly these three week cycles are rolling by. I am trusting that my results will be positive. I believe that’s half the battle.

One Month In

Day 29

Amazingly, it has been nearly one month since I began my treatment. While it has taken awhile for things to settle into a routine, I think that we may finally be approaching a comfort level with the schedule. Of all of the things that have struck me during this last month, I am consistently amazed at the level of competency, and compassion that has been shown by my team, from the doctors to the nurses, who consistently go above, and beyond. It makes such a difference to be working with people that sincerely care about you. It has also been overwhelming to be on the receiving end of such an outpouring of caring and love from friends and family.

I must admit that during this time, I have found that it is so much easier to be the giver, than the receiver in almost any situation. To have the tables turned on you, and be placed in the position of being on the receiving end of so many blessings, at first, feels uncomfortable. The thoughts that come to my mind in regard to this twist, is that I feel unbelievably unworthy of everything that has been done for me, and I wonder if perhaps, this is what I am meant to take away from this situation. To be a cheerful giver is so much easier than being a cheerful receiver. While I hear the words,” it is better to give than to receive” resounding in my head, I have also come to understand that in this case, where friends and family are so helpless to change my situation, accepting their sweet acts of kindness allows them to feel that they are doing something that will make a positive impact. To reject that, would be a terrible wrong, and so, I am learning to say, “yes,” and to accept the outpouring with less guilt.

My personality has always been to push through, cut myself little slack, and minimize whatever problems were plaguing me. I am a glass half full thinker, an eternal optimist who has always believed that everything works out for the best. I am also guilty of digging in my heels when I am told that there is something that I cannot do, (think the knight in Monty Python and the Holy Grail, who wants to continue the fight although he is missing his arms, and legs… get back here and fight… its only a flesh wound!) I am hoping that this optimism, and tenacity (hardheadedness) will serve me well in my own battle.

So, in retrospect, this month has been an eye-opener, as I have had to begin to learn how to, say “yes” more often to others, say,” no” to myself more frequently, to accept my limitations when they arise, and to ask for help when I need it. It is completely unnatural for me, but I am trying to learn that by asking for, or accepting help, it does not reveal a deep character flaw in me, but allows opportunities for others to feel that they are able to make some sort of positive difference in my life, where so much is beyond all of our control. This may be my most bitter pill to swallow, but hopefully, in no time at all, I will find my role reversed once again. I am counting on it.