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.

And Now For Something Completely Different- How About a Little Good News For a Change!

Day 22

Day 22 brings me back around to the beginning of my chemo cycle. One cycle down, 5 more to go. Today started out with mass confusion, as my move from the hospital cancer center, to the doctor’s office for treatment didn’t exactly go smoothly. It seems that with the volleyball like bouncing of the patient, a few things were forgotten, like telling me to go for labs yesterday, so off we went to the hospital for port access, and stat labs. After a couple of hour setback we began my poisoning process. Happiness! Everyone spent the rest of the day apologizing to us for the inconvenience, but not everyday can be paradise, and I am an easy patient, things will happen, it’s just life, no harm done.

There was also wonderful news today. Although I am not naive enough to believe that this will always be the way things will go, I am praying for a trend. Both my tumor markers, and my bone destruction markers dropped. The bone markers returned to well within normal range, and (drum roll please), my tumor markers dropped nearly 25%, a whole 67 points in three weeks. Now I understand why they wanted to repeat the test. While they told me last week that there was a large discrepancy between the labs, requiring a repeat test at the lab that had performed the initial labs, I was sure that the numbers must have risen, and was repaired for that bad news. I would have never guessed that they had dropped so far, and was happy to be blindsided with good news for a change. I am so thankful for each and every prayer that has been said on my behalf. I know that they are what have sustained me. Our God is awesome enough to do anything. I believe I saw His wondrous work today.

Going, Going, Gone

Day 20

Day 20 and I continue to be blessed with a sense of well being. The truth is, that I feel exceptionally well, and exceptionally happy. I can only attribute this wonderful sensation to prayers that I know are being offered on my behalf. There is no other explanation.

After toying with me for about a week, my hair literally fell out in my hands in the shower today. Thankfully, I was prepared with scarves, and various other types of head coverings. I must admit that the sight of my hair, coming out in chunks, was fascinating, almost mesmerizing, as I ran my hands through my once think mane, and came away with more, and more of my coal black locks. By the time I finished showering, I had hair piled up on the ledge. Brushing it into the wastebasket, I watched as it filed nearly to the brim. Looking in the mirror afterwards, I was surprised at the detachment I felt. I was only hair after all, and shockingly, I don’t think it will be as hard to get used to as I thought.

The upside to finally saying goodbye to my hair is this; shower time will be greatly reduced, I have visible proof that the chemo should be working, and I no longer have to worry about loosing my hair. Over, done with, finished. I only wonder now what it will be replaced with when it returns. Maybe straight, and blond, or red? I am pretty amazed at how little it really seems to matter now that it is done. Like so many other things in life, I think the anticipation, and dread, was worse than the reality. It was much better, much easier, than I had imagined.

Hair, Hair, Everywhere

Day 18 and I find myself, once again, in excellent spirits. Its not that I don’t have my moments, trust me I do, but they seem to pass rather quickly… it is one place that I have been truly aware of God’s mercy. I know that it could be very easy to slip down a slope into depression, so I am taking every step I can think of to avoid that trap. To that end, I am wearing the brightest colors I can find, paying more attention to makeup than I have in years, resting when I need it, visiting with friends, and family when the opportunity arises, and making sure I watch at least one very funny video a day. Currently, I am keeping Chris awake at night laughing out loud at Arrested Development, but I am quickly closing in on the end of the available episodes, and am taking suggestions for humor that I can pull up on Hulu or Netflix.

With my hair on a fast track to the floor, I have been wrestling with what to do with my cranium. The options are incredible, really. You can choose from cranial prosthesis, (also known as wigs). Though they not covered by my insurance, after a few days of research, I have found hairpieces ranging from free (thank you American Cancer Society), to thousands of dollars (think I’ll pass on that one). In the wig category you can choose from everything under the sun; synthetic wigs, human hair wigs, full wigs, partial wigs, including Velcro bangs to add under hat brims, stick on side burns, and hair to Velcro to the back of a hat that can even be added as a pony tail.

You can choose scarves for an unending choice of colors, patterns, fabrics, lengths, and styles. If a scarf doesn’t work for you, there are turbans and cute little caps to keep the heat in your head. So, I have decided that if I have to loose my hair, I will cover my head with the brightest, softest, covers I can find. Being a hair twirler, I am leaning toward long scarves with tails…. think gypsy. Every time I tie a scarf onto my head, I see myself as a 12 year old dressed for Halloween, and hope that I am pulling it off better than I imagine. I am sure that it will get easier as time goes by, but for the moment it seems funny to see myself with anything other than hair on my head.

Loosing my hair is a strange, almost surreal process. It is everywhere I go, bits and pieces, little reminders that I am intentionally ingesting poison. A quick run through fills my hairbrush. Running my fingers through my hair removes it by the clump.  Bright white scalp is beginning to show as my part widens and hairline recedes, and there is not one thing I can do to stop it now.  So, bring on the scarves…. Good-bye hair, hope to see you again soon!

Mother's Day

Day 12

Mother’s Day

I have to admit that this has been a wonderful week. For the majority of the week, if someone had told me that I was ill, I would have vehemently disagreed. I almost felt strangely good. Perhaps it was the rebound from the horrible chemo week before, or perhaps, I am simply more cognizant of my life. Whatever the reason, I have been delighted to be able to report that over the last week, I have felt fine, better than usual even.

Saturday evening, Carlee and Donnie invited us to their home to celebrate Mother’s Day. The best part of the night was when old neighbors from our Wesley Drive days showed up. We have all been friends since before most of our children were born, so we have history. It left me wishing that we still lived at 2722.

Sunday was Mother’s Day, which had special significance this year. I was lucky enough to have all of the kids here. Marybeth was sick and remained back in Harlan with her own mother, but everyone else was able to be here with us. Will and Sam struggled to make advancements in the garden project between rainstorms, much to their frustration. The solution to the rain problem was reached when Will took me to see Johnny Depp in Dark Shadows. The movie was very funny and reminded me of my school days when Barnabas Collins was a regular part of our afternoon. It was campy, and funny, and just what I needed…  laughter.

Sunday evening, after Carlee, and Will had gone back home, and things were winding down for the night, I noticed that just on schedule, my hair was starting to fall out. After brushing, I ran my hand through, and for the first time since starting chemo, I came away with a handful. Momentarily, I was very weepy. This, my hair, is something that I am very attached to, but obviously, it is becoming unattached to me.  I lay in bed, now unable to settle, imagining what this new look would resemble. I will be honest, I don’t think I have the shape face that will wear bald well, and I have never been one to rock a hat, but the upside is that it is also strangely reassuring. If I were having no side effects, I would be wondering if the treatment was working. With this realization, I decided to look for a positive tact, and began to search the internet for head cover ideas. Hours later, and now sufficiently tired to sleep, I had watched untold scarf tying videos, and had an order of scarves on their way. They are shipped and on the way. Tomorrow, maybe I’ll shop for hair. Could be fun.

Day 9 Back from the Edge

Day 9

The last five days have been full, and certainly interesting. I have picked myself up off of the floor, dusted myself off, and think we are moving forward. Monday marked the insertion of my first power port. Not exactly the kind of bonding experience I wanted to have with my sister, but here we are with matching ports. So, my thoughts on placing a port are this….. Someone should have mentioned that it was more surgery than a “procedure.” The morning after the port was installed, I mentioned that it felt like I had a straw in my neck, and was reminded by my husband, Chris, that actually, that was almost exactly what it was. Hmmm. Accessing the port the first time was an interesting sensation that I am not anxious to repeat, but I could immediately see the value, and the veins in my arms thank the interventional radiologist.

Monday afternoon found us in Columbus where I was loved, tended, and fed by Momma Mia, and Steve. It was a wonderful visit, punctuated by meatballs, and rigatoni that I can still smell, and a send off breakfast that you couldn’t get at Cracker Barrel. It makes me giggle to think of all of the goodness in her pantry, which resembles exactly what would be found there if I had made the list, from strawberry pop-tarts to orange slices. It was so good to spend some down time with them in the middle of all of this chaos. We need to go back again soon.

Tuesday afternoon brought my second opinion appointment at The James Cancer Center at Ohio State. Chris, and I estimate that my physician there, a real live thoracic oncologist, must have been at least twenty four, which caused me to note that all of my doctors seem to be children. Very smart children, but children non-the-less. Frightening that I am having so little pause turning my future over to children who have been alive fewer years than I have been married.

The Dr. at the James, and everyone there, were so kind.  After looking over my records, the group decided that my physicians were doing everything they would do, which was very reassuring. The only additional tests they would recommend would be on a molecular level to determine whether my cancer cells had one of three specific markers. If that were to be the case, they might recommend a new, targeted treatment. I believe that both The James’ doctors, and my local guy will work together to get those tests complete. I am finding it funny that I actually know two molecular biologists, but neither of them works in the oncology field. Perhaps I should exert some persuasion.

Day 8 arrived and found me back at The Christ Hospital Cancer Center for week 2 of my trial drug. Really, I cannot say enough about the wonderful staff there. After reviewing all of my labs and fussing with me about loosing too much weight last week, my oncologist pronounced that my labs looked like they hadn’t touched me. Good news on the white and red cell count, and probably accounts on my bouncing back so well. I am so blessed, and have no illusions that this good news is anything but the result of all of my family, and friends’ prayers. Again, and again, I thank you.

Day 4 Feeling Low

Day 4

Day 4 cut my legs out from under me. After feeling so well after treatment, Saturday slapped me across the face. The upside to the day, was that I had my wonderful family around for support. I had asked the boys if they could help me by putting in the gardens, and they are doing a wonderful job. I am really looking forward to pulling some great produce out of the beds this summer.

Will and Marybeth brought wonderful food, and the most special greetings from Harlan. Their entire church made cards for me, right down to the little ones. It has certainly let me know that I am not alone in this, and that so many people have me raised up in prayer, many that I have never met. I am humbled.

My good friend Kelley brought food enough to feed the masses, slippers to keep my feet warm, and a wonderful saying about friendship. Although the poem on friendship was directed at me, it is Kelley that epitomizes what friendship should be. By any measure, I fall short of her example.

Carlee, Donnie and the boys were also here to work on the garden project and keep me company. Even if I wasn’t in the middle of things yesterday, I appreciate everyone being here, and all that was accomplished for me.

Day 3

After a restless night, Friday proved to be a wonderful day. Although I must admit that I am fighting exhaustion, I was thrilled to be able to get back to my Friday ritual of Frisch’s with Dad and Jody and Louie. I brought Sam as my back up driver, but happily, didn’t need to employ him. It was good to put some normal routine back into my life after the last month. It may not last long, but at least for today, it was a normal Friday.

Although I would have been happy to crawl into bed at 6p.m., instead, we attended a wedding. It was a beautiful ceremony and reinforced my thought, that if I am going to be selective in how I expend my energy, I would like to spend it on the most lovely moments available to me.

It was wonderful to see this young couple just beginning, and so full of hope. The entire theme of their ceremony was hope, and it hit home with me. Life is all about hope, no matter what age or stage, hope is vital. Hope is what gives us the energy and impetus, to put one foot in front of the other on whatever journey we find ourselves. Tonight, I’m clinging to hope and holding on tight.

Day Two

Day 2:

Day two, and I awoke a little hesitantly. Mornings have been strange these last few weeks. Instead of waking gently, and quietly reeling my brain in from sleep, I now wake with a startling confusion, that “something’s wrong” feeling. My next thought is that this is a dream, and a very bad dream at that, but it is quickly followed by reality’s wake up call, something is going on that I needed to remember, and very quickly. And there it is, I recall the last few weeks, x-rays, tests, diagnosis, chemo. Ah, that’s right, yesterday was chemo day one. Since my diagnosis I had been incredibly anxious to begin my treatment, and yesterday, it had happened. I did a mental scan from head to toe, headache, no… nausea, no… pain at injection site, no, rib pain, some, muscle pain, no. Hmmmm…. I think that I actually felt better this morning than I have in a days. I know it is early in the process, but I am thrilled, that at least for this morning, I feel ok.

So, you may be wondering why I have decided to keep this blog, and to invite you to join in. I have no idea what the future will bring, at least the near future, but I know that things will change, maybe swiftly, and I wanted to have a way to communicate with my friends and family in a very honest, and open way, so that they could keep up with my progress, and know where to direct their prayers. We’ll see where it goes and how it goes, but for now, if anyone wants information, they can come here and read of my adventure. This does not mean that I do not want phone calls or other correspondence, I do, I just wanted to give everyone another option and leave myself a creative outlet (imagine that).

Yesterday, I was given everything but the kitchen sink. Today, I go back for the kitchen sink. After that, we will be on a one-week cycle for the trial, and a 21 day cycle for the standard protocol. I feel so incredibly blessed to have been randomized into the trial, and into the arm, which will receive the extra biologic medication. It seems that I will be a trail-blazer here, as I am the first in the Midwest to receive this drug. It is no the first time it has been trialed, and they have seen good success in previous trials, so I am very encouraged and so thrilled to have anything available to increase my odds.

So, the sun is shining, the birds are singing, my treatment has started, and I am happy. It’s going to be a good day, followed, I hope by many more like it. I see this as my winter, a season I dislike, but must trudge through with its gray skies, cold, and slippery ice. Winter can be an uncomfortable place, but there are moments of beauty if you look for them. I intend to look for them in this season of mine. I intend to find them every day. Today, I don’t need to look very far. 

Day one..... And so it begins

Miss a day- miss a lot!

Hello folks! It seems that today, I have won the chemo lottery... (no really... I am truly excited).... and been randomized into the national study I was praying for. To put it in a nut shell, my un-welcomed guest will be treated to a cocktail of four drugs, two of which are new and experimental. The better news is that this trial is seeing very good results, so, it is even more reason to be optimistic, which I am.

It may seem strange to have a picture of the top of my head to start out my blog, but I wanted to pay my respects to my crowning glory, for I doubt that I will manage to get out of this with my hair. A small price to pay indeed. Perhaps when it makes its return I might be a blond or a red head.... you never know. :) In the meantime, I will develop an interest in hats.

To those of you who I may have caught off guard.... I was told a little over a week ago that I have the dreaded C word. It appears to be an aggressive variety, not surprising, because I have never been one to do things half way. More has almost always meant better, except, I am finding in the case of cancer. The plan is to tamp it down and beat it back. I am ready.

For those that I haven't spoken to ...  I am the queen of optimism. I am in wonderful health, except for this silly cancer thing, and wonderful spirits, and am ready for the fight of my life. I want all of you to know that I am worried more about my friends, and family than myself. I hate to see them worried about me... so.... while I would love you to put me on every prayer list you might know or hear about, I would also love it if you could remember my family, friends, and the wonderful people who will be treating me. It is my deepest desire that God gets so tired of hearing my name that he wipes this evil thing away just to quiet the heavens and regain peace in the kingdom.

I will be updating this regularly, so, if you want to follow along, you are welcome. If you know of someone else who might be interested, please send me their email and I will add them to the list and send out an invitation. I am happy for my friends and family to have access here to see what it going on here and to leave messages and comments if they like, but I didn't think that I wanted it left open to the entire free world. I hit most of the people in my address book, but sadly I know, I missed many, and was lacking emails for quite a lot of my favorite folks.