Katie & Briscoe

Katie & Briscoe

Tuesday, September 28, 2010

Life on Chemo

Well, I had my 3rd chemo treatment on Monday. I was tired when I went in the door and more tired when I left. I also felt a little queasy, possibly because I didn't eat breakfast that morning. I hadn't slept particularly well the night before, either. Some of the meds I take can tend to make sleep a little hard to come by. The muscle relaxer can cause insomnia. And on the day I get the chemo they hit me with a massive dose of steroids, which I follow at home with more steroids for the next 3 days. The steroids can make you antsy, which interrupts my sleep as well. So I generally sleep for a couple of hours at a time, wake up for a while, then go back to sleep. It's kinda annoying, but it isn't so bad. At least I'm not trying to work while going through all this. If I need a nap, I can take one. I don't know how the women who work through their cancer treatment do it!

Okay, I'm going to post some websites now that offer scarves and hats for chemo patients... or anyone else who is looking for a head covering. First I'll list the sites I've actually ordered from, or who have sent me something for free. Yep, I said free! Amazingly, there are people out there who want to help just for the sake of helping.

First up is The Lydia Project. I mentioned them in an earlier post, so I won't go into a lot of detail on them. They will send a homemade tote back, filled with encouraging and useful items, to any women with cancer. They will also send encouraging emails or cards, or make phone calls throughout the patients treatment. If you happen to live in an area where they have volunteers, they will even make personal visits. It's a wonderful program and well worth supporting or contacting if you know any woman with cancer.

Next up is Heavenly Hats, an organization that collects and sends brand new hats to anyone with hair loss due to any medical condition. Men, women, children, whoever is in need. The organization was started by a ten year old young man in 2001. He and his mother still run the organization with the help of volunteers. It is another wonderful program, and one that deserves support. They offer many ideas of ways to help that are not just centered around monetary donations. I have requested a hat package from them, but have not received it yet. I'll post more when I do.

Now we'll talk about the Good Wishes Program run by Larurie Erickson through France Luxe. Here is their Mission Statement:
Our mission is simple: to provide, free of charge, one beautiful It’s a Wrap or Good Wishes Scarf to women and children experiencing the thinning or loss of hair as a result of illness or treatment, to in some small way, to ease their journey. Our goal is to provide a small bit of comfort and share the power of positive thinking and good wishes with these individuals on their path to healing and recovery.
I requested one of their It's a Wrap's a few weeks ago. Laurie herself responded via email to my request and asked me to select a couple of patterns I liked. I wound up narrowing it down to three. I received my package from them a few days ago containing one of the It's a Wrap patterns I had chosen. Included with the wrap was a sweet card signed by everyone in the office offering words of hope and encouragement. It was very sweet. Even Mark seemed moved by it. (No tears or anything, but he had to admit that it was a very nice gesture. LOL) The Wrap is very simple, but there are just so many beautiful fabrics that they use that I had a difficult time narrowing down my choices.
This is the style I got, though mine is actually a green background with teal flowers. Same print, just different colors.
Okay, so that's it for the freebies. Well, the American Cancer Society has offices all over the place that I believe offer hats, scarves, and/or wigs free of charge to cancer patients. I have not visited one of their offices, but I've read pamphlets from the Dr.'s office that mentioned them, as well as seen them mentioned on their website. Also, they partner with many private businesses from hair salons to wig shops, to others who sell head coverings to provide free wigs to cancer patients.

So, here are some of the places I have actually ordered from. I got many of these sites via the Cancer Survivors Network. The ladies there are just a font of information on pretty much any subject relating to breast cancer. Someone mentioned an Etsy shop called The Hat Cottage so I paid it a visit and just fell in love with a couple of their hats. Had to buy them. Primarily, I loved this first one. It just thought it was so adorable. And they ship a second item at a reduced charge so I picked up the second one mostly for that reason. I have worn both of them, though, and I like each of them.
I just fell in love with both the fabric and that adorable little ribbon at the back. I couldn't resist it!

Turns out she doesn't have any more of the one I ordered, but this one is made the same and the fabric pattern is similar.
The American Cancer Society also produces a catalog with all sorts of products from wigs to hats and scarves as well as bras and just about anything else you can think of. It's called TLC and I ordered a couple of hats from them.
This one looks kinda stupid on me, so I haven't worn it. I might once the weather turns a little colder, though. We'll see.

Dingbat that I am, I didn't realize this one was actually a scarf with a hat-like brim. It still has to be tied at the back, which just sort of annoyed me a little since I thought it was pre-tied. Still, it is cute. I haven't worn it yet, though. 
Up next is Topsy Turban. They sell more than just turbans, though that is one of the things I bought from them. In general, I don't like the vast majority of the turbans I have seen. The style of them is just too weird for me. But, I liked this one because it came with one scarf and it can be paired with any others I already have. I loved that idea. Plus, while most of everything else I have purchased is what I think of as more for summer, this had is definitely for cooler weather.
I got the black one because I figured it would match all my scarves.
I also bought this one because I thought it was cute and I loved the idea of a scarf that was pre-tied. Plus, it looked like something that would be pretty easy to duplicate out of my own fabrics, which it did indeed prove to be.

I think that's it for the things I've ordered. There are other hats and such that I've picked up here and there, but nothing particularly noteworthy.

Here is a not so short list of other places I have visited. I have not ordered from any of them, though I have seen some things I liked. I'm just including it for reference. All of them can be found by doing a simple Google search for "Chemo Hats" or "Chemo Scarves."


Chemo Savy
Headcovers Unlimited
Just In Time (so named because they tailor their catalog to the season)
The Beau Beau (VERY expensive, but beautiful.)
Hats 2 Cover
Hats, Scarves and More (They have hats, scarves and other accessories for Women, Men, Teens, & Children)
Hats For You (They have hats and scarves of all kinds.)

There are no doubt countless others out there. Etsy.com has bunches of stores that sell all kinds of hats and scarves. Just do a search for "Chemo Hats" or even hats in general. Also, many, like those sold by The Hat Cottage I mentioned earlier, are marketed both as chemo hats and as scrub hats for nurses. In fact, it was one of the nurses in the recovery room when I had my lumpectomy that first made me consider looking at scrub hats. She was wearing a really cute hat that looked a lot (in style) like the second one I ordered from The Hat Cottage.

So, here are the resources I've found for head coverings. They offer all kinds of options for anyone going through this mess. I just couldn't see myself doing the wig thing, so I'm sticking with hats and scarves.

I mentioned that the second photo of the pre-tied scarf from Topsy Turban turned out to be easy to duplicate. Several days ago my friends Carolyn & Mary (made famous by video of "The Woman With the Crown" that I published in a recent post) got together and used that scarf as a pattern to make me scores more. (11 to be precise.) Well, we cut out and partially assembled 22 of them. They were keeping half to take to a craft show coming up early in October. They managed to fully finish 4 of the scarves for me. I'll get the rest when they get them finished. I don't mind the wait, since they're the ones doing all the work. And the fabrics I took over - as well as some they provided - were just gorgeous. I'll post some pics of their stunning work as soon as I figure out how to show them off to their best advantage without trying to model them myself. Not feeling much like posting pics of myself right now. LOL Needless to say, though, Carolyn and Mary are both artists. Carolyn makes the most stunning quilt projects I have ever seen, and Mary is a true seamstress as well as an embroiderer. Between the two of them, I doubt there's anything they don't know about fabric and/or sewing. They've been very generous to teach me many things, though I have a LONG way to go before I can even scratch the surface of their combined knowledge. But they are much more than friends who sew. They are emotional, spiritual, and trusted advisers and supporters. Mary is my pastor's wife and has taught me so much just by her example. Carolyn is a very dear friend who I have the utmost respect for. She is the most young at heart 70 year old I have ever known. I have never spent time with her that she didn't bring multiple smiles to my face. Usually I laugh out loud. I love them both dearly and am so thankful that God brought them into my life.

Having said all this, I need to make mention of a desperate situation in Mary's family. Her granddaughter, Eden, was struck terribly ill earlier this afternoon. She was having convulsions and/or seizures. And ambulance was called and as of the last report I received, she was not breathing and as the ambulance was rushing her to the hospital it had to stop twice to work on her. The situation is dire and in need of much prayer. PLEASE PRAY FOR HER! God hears and answers our prayers. And whatever happens with Eden, I know God is in control and will grant grace and mercy to her family in this time of crisis.

That's it for now, I think. I still have much to say, and I don't post as often as I should, but sometimes it's hard to sit down and just do it. Sadly, I'm often too addled by the "chemo brain" to string coherent thoughts together anyway. LOL Everyone take care, and remember to keep counting your blessings and giving God the credit for them all.

Friday, September 24, 2010

Thank You, God, for Muscle Relaxers!

So, I've got this whole new issue with MAJOR back spasms. NO fun at all. I had a few after the first chemo treatment, but this time around they've been much, much worse. Bad enough to literally stop me in my tracks and to push me dangerously close to hyperventilating during the worst one. I talked with the Dr.'s office on Wednesday morning (after having a HORRIFIC spasm the night before that I thought just might actually kill me. Sounds melodramatic, but I could not breathe or move when it hit.) The nurse called back to let me know he was prescribing a muscle relaxer for me. I started taking them Wed. evening. It took a while for them to kick in, but I was feeling vastly better when I got up Thursday morning. Today (Friday) has been a little rough for me. I had an appointment in Madison and decided to go to Walmart after to pick a few things up. I actually grabbed a quick bite to eat,stopped at the Dollar Tree to pick up a pair of cheap sunglasses, ran into Staples looking for something, then went to Walmart. By the time I left, my back was throwing a royal fit. I don't even want to think about how bad it would have been if I wasn't taking those muscle relaxers! As it is, I wasn't entirely positive that I'd get the few things I'd bought loaded into the trunk without having to flag down a passerby for help. I had planned to go to Carrollton from Madison to look for something I can't find in Madison, but I ditched that idea quick. I figured I'd be doing good to just make it home.

You know, it's kinda hard to turn around and look behind you when trying to back up or change lanes when doing so causes a massive muscle spasm. Basically, I was just thrilled to make it home in one piece. LOL I did get home safely, though I left most of what I bought out in the car. Mark will have to bring it in tomorrow. I got some cream cheese and pepperoni slices, as well as a couple of pieces of fabric, and that's all that made it into the house with me. The rest of it is hardly what I'd call heavy, but it was just about all I could do to wrangle it into the trunk non-the-less, so I figured it would be just fine where it is for now. I came into the house, put the 2 cold things into the fridge, got myself a drink, and collapsed onto the couch with my beloved heating pad.

I am feeling better now that I did on the way home. When I got in the car after coming out of Walmart, I took 3 Ibuprofen tablets. I guess they've kicked in, because I'm not hurting quite as bad as I was. I'm thinking that I may have to talk to the Dr. about something stronger, though. Much as I hate it. I really did not want to have to take the muscle relaxers. I hate having to take prescription meds. But that spasm Tuesday night was enough to make me bite the bullet and call the Dr. I do believe that is the worst pain I've ever felt in my life. And the worst part is that it was so bad that my entire body seized up. Before the spasm was even over I could feel my lower back starting to spasm as well. It's been achy and sore ever since, though it isn't spasmodic like the other spot is. I'm on a very low dosage of the muscle relaxer for now. I thought it was going to be good, but after today, I'm wondering if we might not have to up the dosage. I need to be able to do basic things like go to the grocery store or sit in a waiting room chair without having it trigger an episode of spasms. I'm supposed to talk to the Dr. about it when I go in on Monday to have my 3rd chemo treatment.

Honestly, I'm a tiny bit worried about how the next treatment will effect me. I was a lot more tired after the 2nd one than I was after the 1st, which is not unusual. But what does that mean for the next one? And the aches and pains from the Neulasta shot were a lot worse the 2nd time around, too. I think it is at least partly responsible for the muscle spasms. Just please pray that everything works out. I know God is in control and that He will get me through it.

Tuesday night, when that really bad spasm hit me, I couldn't do a thing. I'd gone into the bedroom to lay down with the heating pad on my back. The spasm hit me the second I laid down. It usually spasms a little when I lay down, but never anything like what happened that night. It hit me so hard that breathing was impossible for a few seconds. Then, when I could take a breath all I could do was take fast, shallow breaths because deep breaths were impossible. My entire body felt like it was in spasm right along with my back. I was shaking from the pain. I couldn't yell for Mark, and even if I could have, I doubt he would have been able to hear me all the way at the other end of the house. I hadn't even brought my cell phone into the bedroom with me, so I couldn't call him, either. So, I did the only thing I could do. I closed my eyes and started praying.

I told someone earlier today that skeptics out there would probably have all sorts of answers for what happened next. I was on my back and though the heating pad wasn't precisely where I would have liked it to be, it was beneath the spot that was the source of all the spasms. I turned it on right after I stopped praying. And, as bad as muscle spasms can be, the worst of the pain does usually come and go fairly quickly. Still, the pain that had my entire body trembling and brought tears to my eyes faded almost immediately after I prayed. I call that an answered prayer. You can call it whatever you like. But the pain eased and though I still could not move at all, at least I wasn't in agony. My pulse rate began to ease, I was able, after a few minutes, to relax my body while the heat from the heating pad worked to ease the spasms. Mark came in to check on me just a few minutes after it happened. By then, the worst of it was over, though, like I said, I still couldn't move. Any effort to change position or roll over or anything like that caused a jab of pain as the muscle would clench. So I just laid there with the heating pad. I read a little, prayed a little, and just let my body slowly relax. It was several hours later before I felt comfortable trying to roll over. When I managed that without triggering another series of spasms, I figured I was going to be okay. I didn't sleep much, and I was up early the next morning to call the Dr. I did feel good enough to fix breakfast that morning, though I didn't do much else for the rest of the day until we went to pick up my new medicine that evening. Still, though it all, I am thankful. Thankful that I wasn't completely alone when it happened. Thankful that God heard my prayer and answered it so swiftly. Thankful that I could call the Dr. and get something to help with the spasms. Thankful that the pills are generic and so therefore are also pretty cheap. And thankful that it isn't worse than it is. Because it can ALWAYS  be worse. However bad we think we might have it, however rough the road we might be walking, there is always someone else out there who has it harder. It reminds me of a little story I read once.

A man comes to God and tells Him that he just cannot carry his cross any longer. It is too heavy a burden to bear. So God leads him to a door and opens it. Inside there are crosses everywhere of all shapes and sizes. God tells the man to put his cross down and go pick out another one. He leans his cross against the wall and begins to wander through the massive room. He looks at all the crosses, some so enormous that they reach the ceiling far above. Others smaller, but made from terribly rough wood that would certainly be uncomfortable to carry ever day. He lifts a few of the crosses, but they all seem so heavy! Finally, he spots a cross that is much smaller than all the others. He rushes to it, picks it up and sighs in relief. It isn't all that heavy at all. He carries it to the door and nods as he passes God on the way out. God smiles and says, "That's the cross you came in with."

It's easy to think our "cross" is heavier than someone else's. Easy to look around us and think that we are alone in our suffering or struggles. But that is never the case. God is always with us. He even bears the weight of our cross, if we will let Him. And there are always others out there bearing burdens far greater than our own. Maybe we can't see them because the person is always smiling. God sees our hearts, though. He knows what we carry within us that no one else can see. He sees our tears, even if they aren't physically falling from our eyes. How wonderful it is to know we are not alone! Christ Jesus died for us, suffered in our place, took on every sin we and the rest of the entire world have ever committed. He was beaten and bruised for us. The Bible tells us that by His stripes we are healed.

There's a song by the group Selah titled Beautiful, Terrible Cross. It is such a powerful song because that's what the cross is. It is a terrible, horrific, evil device of torture created by men. Yet, the cross of Jesus Christ is the most beautiful thing in the world because it is there where our Salvation was made real. It is the place that our Lord and Savior won the battle, where He defeated death forever and made it possible for us to be fully free from the inescapable debt of sin that we owed. It is beautiful and terrible at the same time. Here are the words of the song, followed by a video.

There is a beautiful terrible cross where though You committed no sin
Savior You suffered the most wicked fate on the cruelest creation of men
Yet on that beautiful terrible cross You did what only You could
Turning that dark inspired evil of hell into our soul’s greatest good
We see the love that You showed us we see the life that You lost
We bow in wonder and praise You for the beautiful terrible cross

There on that beautiful terrible cross though darkness was strong on that hill
You remained sovereign, Lord, still in control as Your perfect plan was fulfilled
We see the love that You showed us we see the life that You lost
We bow in wonder and praise You for the beautiful terrible cross
We gained the riches of heaven Jesus You paid the horrible cost
We stand forgiven and praise You for the beautiful terrible cross
For the beautiful terrible cross

In the cross, in the cross be my glory ever
Till my raptured soul shall find rest beyond the river


If that doesn't touch something inside you, then you might want to check up on your salvation. And just for good measure, here's another powerful song on the same subject: The Power of the Cross, by Keith & Kristyn Getty with Stuart Townsend. Here are the words, again followed by a video of Kristyn singing the song.
Oh, to see the dawn of the darkest day: Christ on the road to Calvary.
Tried by sinful men, torn and beaten, then nailed to a cross of wood.

This, the pow'r of the cross: Christ became sin for us;
Took the blame, bore the wrath— we stand forgiven at the cross.

Oh, to see the pain written on Your face, bearing the awesome weight of sin.
Ev'ry bitter thought, ev'ry evil deed crowning Your bloodstained brow. 

This, the pow'r of the cross: Christ became sin for us;
Took the blame, bore the wrath— we stand forgiven at the cross.

 
Now the daylight flees; now the ground beneath quakes as its Maker bows His head.
Curtain torn in two, dead are raised to life; "Finished!" the vict'ry cry. 


This, the pow'r of the cross: Christ became sin for us;
Took the blame, bore the wrath— we stand forgiven at the cross.


Oh, to see my name written in the wounds, for through Your suffering I am free.
Death is crushed to death; life is mine to live, won through Your selfless love.

This, the pow'r of the cross: Son of God—slain for us.
What a love! What a cost! We stand forgiven at the cross.

I really do love the Gettys. They have written so many incredibly beautiful and powerful songs. They consider themselves to be modern hymn writers and I would have to agree. I love their music. And Kristyn's voice is so typical of Irish singers. Beautiful, clear, and deceptively powerful. They've been given a wonderful gift and they have devoted themselves to spreading the gospel through their music. I love that.

Okay, enough preaching for one night. I'm feeling much better now that I've spent some time with my heating pad. I think I'll see if my back will hold up to me doing a little laundry. The bending over is often a bit of an issue, so we'll just have to see how far I get. I really need to toss a few things in the washer, though. I'd love to try running the vacuum, too, but that might just be a little too much. LOL Poor Mark is going to have to spend his weekend cleaning house. Bless his heart. I sure do love that man. :)

I hope everyone out there who reads this will take the time to thank God for all their blessings. A thankful attitude - as well as the ability to laugh at yourself and your situation - are profoundly important keys to living a joyful life, I believe. So be thankful for all you have and take a minute to smile and laugh. It's a great way to relieve stress!

Blessings to all,

Jenn

Saturday, September 18, 2010

Helpful Resources... Long Time Overdue

I should have gotten around to doing this a long time ago. I've mentioned some of the sites that have been useful to me in my journey so far, but I haven't taken the time to put them all down in one place. I'm going to start with the place I started myself. It's where anyone with cancer or anyone who knows someone with cancer should go right off the bat because they obviously have tons of information. My first link: The American Cancer Society. Their goal is to provide information and they do it well. Perhaps a bit too well for some, I guess, as they offer a depth and breadth of information that can actually be a little intimidating and/or overwhelming, especially for the newly diagnosed. Still, I'd recommend anyone seeking info on any kind of cancer start with them.

Related to the ACS - in fact a part of their organization - is the Cancer Survivors Network. As much as I appreciate all the sites out there dedicated to helping cancer patients and those who care for them to educate themselves, this site has probably been one of the most important to me. It is a place for patients, family, friends, and survivors to gather to share advice, encouragement, or tears and to ask any question and know that someone - probably MANY someones - will have an answer for you. It is broken down into boards dedicated to many specific kinds of cancer as well as some more generalized areas for encouragement or memorials, etc. Having Breast Cancer, I spend pretty much all my time on that board. I have met too many wonderful women to mention them all. I have been immeasurably comforted knowing that there is someone out there who I can go to when I have a question and know that they've been there before me. I searched the site and found countless suggestions for ways to ease potential symptoms, more than a few of which I have put into practice and found helpful. They also warned me of possible symptoms that might not be mentioned by doctors or nurses. Some things are fairly rare, but if they were to happen with no warning it would be very frightening. Having the wisdom and experience of these other survivors makes this whole journey far less intimidating to face.

I know everyone isn't the same. Some folks out there don't really want to know all the details about their treatment, or possibly even their disease. I am NOT one of those people. I am, and always have been, an avid researcher, believing that knowledge and understanding is a tool that can help me fight. When confronted with any illness or unfamiliar situation within my family, one of my very first actions is to sit down at my laptop and start doing research. The ACS is the obvious choice for this when it comes to cancer, but there are some other places that I've found helpful as well. One of them is a site put up by Scott Hamilton, the figure skater who beat cancer himself. His site may have much of the same info as the ACS, but I believe it is laid out in a somewhat more "user friendly" manner. In particular, I like the way they have set up their pages of info on chemotherapy drugs. It is easy to read, easy to understand, and laid out in a straightforward manner that I find appealing. It is less about explaining the cancer itself and more about the chemo treatment and how to deal with it. Hence the name: Chemocare.com.

Another site that I have visited, though not spent a tremendous amount of time at is BreastCancer.org. It is another site geared toward education. I visited it early on, but have not been back all that often because I have just been content with the CSN for the most part.

Perhaps this is odd, but I honestly cannot say I have spent much time at all at the Susan G. Komen site. It might be because I am at heart a rebel and for some inexplicable reason, visiting THE site responsible for the whole breast cancer movement, pink ribbons and all, was a little... cliche for me. Sounds crazy, I know, but that's just who I am. Basically, I found pretty much everything I was looking for before I made it to the site and so have not spent time there doing research. I have no doubt at all that others would go there first. Maybe if I take the time to have a look around, I might wish I'd done so as well.

The thing is, one of the things I read on the CSN site soon after my diagnosis was a topic about how sick everyone was getting of all the pink stuff. At that time, I didn't get it. I still don't have a personal issue with it myself, but then I am pretty early on in my battle. After a while, I suppose every pink ribbon, or BC shirt, or cap, or scarf starts to feel like some kind of label instead of what it is intended to be. As one woman said - who got so fed up that she shredded all her pink ribbon stuff - cancer is not who she is, it is what she has. She did not want to be some kind of walking billboard for it. There were a lot of others who shared that sentiment. So, while the Susan G. Komen site undoubtedly provides a profoundly valuable resource, and is on the forefront of helping women to learn about the disease and to take steps to catch it early (all obviously worthy actions) I suppose I just don't want to feel like I'm jumping on some kind of bandwagon with a bunch of other pink clothed zealots. And having said all this, I would still recommend anyone visit the site, just for their own education. Not to mention that if you're looking for somewhere to donate, this would obviously be a good choice.

My cancer diagnosis has fallen in something of a down time for the Relay For Life, meaning that the race is over for this year and I am not personally aware of any other cancer, or breast cancer specific, activities that are coming up. I live in a small town, though. Larger cities likely have many more events and/or resources for local patients. I suppose I will get involved with the Relay next year. I honestly don't know, yet. I know when my sister had lung cancer she had some friends walk for her in her local Relay and she said it meant a lot to her.

I won't even pretend that this is anything close to an exhaustive list of resources. The Web is a vast place, full of practically infinite sources of information on almost any topic. But these sites are the ones that I have either found helpful or at least knew of BEFORE I was even diagnosed. I have another list of sites that provide hats, scarves, wigs, etc. for cancer patients. I mentioned the Lydia Project in an earlier post, but when I do a post for patient help, I'll mention them again. My best advice for anyone facing cancer, or any other major health issue, is to educate yourself first. Don't just blindly trust a doctor, even one you think you know. They are, like all the rest of us, fallible and can be wrong. And sometimes, they're just bad at the their jobs. Seems hard to believe, but I've witnessed it first hand more than once in my life. When it comes to your health or the health of anyone you care about, YOU MUST BE AN ADVOCATE! Do not be intimidated, or  scared of hurting the feelings of some doctor. It isn't their life that might be hanging in the balance. Do the research, ask questions, take notes if you need to and then ask more questions. Never let yourself go into something as profoundly difficult as cancer treatment without knowing exactly what will happen, what you should experience, and what to do if something goes awry.

Last but not least I must mention, as always, that I would never in a million years know how to face this thing without God. He gives me strength and purpose. He lifts me up when I feel like the best I can manage is a crawl. While I'm a firm believer in education and knowledge, I also know that ultimately it is God Himself that is in control of all things and no amount of book learning is going to override that fact. I mean this to be encouraging. Doctors have told many people out there that there is no hope for them, that they are practically already dead. They're smart people who spend their lives learning to take care of others, but they are not God. He alone knows when your time will come and no man, however smart he may be, can trump that. So if you're going through this or any other seemingly impossible battle, look to God for support and power. There is no foe He cannot defeat, even death itself.

Pluses and Minuses....

As is generally the case with everything in life, chemo treatment comes with it's share of benefits and problems. Mark has struggled with those problems from day one. Not that I can blame him. Just doing the research about the chemo meds themselves is enough to make a person wonder if the doctors really are here to help. Honestly, what kind of sane person things it's a GOOD idea to pump themselves full of something made from MUSTARD GAS? As one of the other ladies on the Cancer Suvivors Network called it, "Chemical Warfare." Being waged on ourselves..... I could have sworn there was supposed to be some kind of international ban on that sort of thing. Sadly the lady who described the treatment so accurately has recently lost her battle with the disease. She'd celebrated her 1 year anniversary of beating the breast cancer when it was discovered that it had returned in her liver. I cannot say that I knew her, or that I ever even had the opportunity to read much of what she posted on the CSN website, but judging from the MANY responses to the news of her passing, she was a much loved woman who touched countless lives with her wit and spunk.

So, here I am on a lovely Saturday morning, looking at the glorious sunshine and the infinite beauty of the world our Lord has made and I'm so tired and sore I can barely more. Back to the pluses and minuses, I guess. The day after I get my chemo I return to the treatment center to receive a Neulasta shot. This medicine keeps my white blood cell counts from tanking, which in turn helps me fight off any possible infection or sickness I might become exposed to. It's a wonderful thing, no doubt. Without it, my chemo would likely take much longer to complete just because it takes 3 weeks for the body to try to rebuild those cells naturally. That alone would draw out the treatment considerably longer since they'd have to wait for those counts to rise before carpet bombing the cells again. Not to mention the significantly higher risk of picking up some random bug that would make me sick and thus delay any treatment until the illness was beaten. So Neulasta is a wonderful thing as a whole. The drawback to it is that it causes "flu like" symptoms. This means aching all over, muscles, joints, everything. My first time getting it, the aching was pretty much confined to my neck and shoulders, which was bad enough. This time around, it's all over.

Honestly, I don't want to come off as a whiner or a complainer. I really can't feel sorry for myself. It could be so, so much worse. My symptoms have been VERY manageable, and I am profoundly grateful to God for that. But anyone out there who might be facing this same battle should know that when they tell you to start taking pain meds for the aches BEFORE you actually start hurting, they aren't kidding! Again, though, for me simple things like Tylenol or Ibuprofen seem to keep the worst of the pain at bay. I've read of others who had to take far stronger meds. So here's one more thing to be grateful for.

Generally, I'm feeling pretty well. I saw my oncologist last Thursday and he seemed to be pleased with how I'm doing. Fatigue, hair loss, and some aches and pains are pretty doggone mild as symptoms go, I think. So I'm happy overall, despite my tendency to whine a little. :)

I went down to our local theater last night to watch a play in which a dear friend and her husband were acting. We are a small community with a small theater and all local casts and crew. I have to say that I am always impressed by how good the shows they put on are. Not to mention the director seems to favor comedies and these days, a good laugh is some of the best medicine out there. So Mark and I laughed and had fun last night, which is always a good thing. As I said, our local theater is small but wonderful. I love going down there. I've never been disappointed.

Anyway, I just wanted to post a quick update on the state of affairs. My stubbly head is still kind of odd to me, though I'm getting used to it. It is much cooler to not have hair, but now I have the issue of my head getting crazy hot beneath my hats. I told Mark last night during one point of the play that I thought he could cook an egg on top of my head. Gotta love those hot flashes! I've threatened to just go "topless" altogether. (First time I saw the CSN ladies calling it that, I thought, "what on earth?" Then I realized they meant skipping head covers of all kinds. LOL) If the hot flashes don't tone down a bit, I might just be sporting the bald look for good. I'm hoping the coming cooler weather will help some. At least it might make it less uncomfortable. Fact is, my head was actually cold last night for a while since the temps dropped down into the lower 50's here. Just one more endearing side effect of the chemo... a wildly out of control internal thermostat.

So, I'm doing well, if a bit tired and sore. Overall, I guess the pluses must outweigh the minuses. Logically, it seems insane to poison yourself in an effort to take out a few random cells that may or may not be floating around inside your body somewhere. But, I count my blessings that the chemo has come so far from where it originally began. Maybe, with God's grace, they'll come up with a better way someday. Maybe God will allow us to overcome this disease altogether. I don't know. I just know I'm grateful that I have a family and friends who care for me, that I have a husband who loves me no matter what, that God saw fit to provide my husband with a job that included awesome health insurance literally days before I would so desperately need it, and that I have a Father who loves me enough to care for me and to provide every need I might have. Life is good. A few extra naps and a couple aches and pains are nothing to worry about.

Wednesday, September 15, 2010

Hair Today, Gone Tomorrow....

My head has been shaved. Well, not shaved with a razor, but using the trimmer I do Mark's hair and beard with. I used the shortest guide it had, just to make sure I didn't get any scratches from the trimmer blades. My hair is now 1/8 inch long. Mark kept asking if I was sure I wanted him to do it and I told him I couldn't stand the shedding any longer. I had hair everywhere. I looked like I'd been rolling on the cats or something. Not to mention that everything I tried to eat inevitably wound up with at least one of my hairs in it. They were falling out all by themselves. And Lord help me if I actually touched my hair! Here's an example of what I'd get just by running my fingers through my hair:
I took this a few minutes before Mark shaved my head.
Mark says I look good bald, though like I said, I'm not really completely bald yet. I will be before long. Another couple of days, I guess. I'm just hoping it doesn't take too long. Several of the others on the cancer survivors network have said that it can be uncomfortable once your hair is this short and your scalp starts struggling to hold on to what hair is left. Hence the lint roller. They say it really works. I was talking to another chemo patient while we were getting our chemo on Monday and she said she did the lint roller thing too. Sounds nuts, but it does the job I guess. Some of the ladies have said that using an electric razor on it will help, too. I can already see what they mean. The fuzz in actually oddly sensitive. I tried on one of my hats and it's kinda annoying the way it presses on the fuzz. We'll see how it goes when I try to sleep tonight. They say that can be a problem, too. If it gets too bad, I guess I'll get out the electric razor and give it a try.

As for the second chemo treatment: it went well. I have been much more tired this time around. I was just plain exhausted yesterday. I'm tired today as well, but not quite as worn out as before. My steroid high didn't get me as far this time around. Mark and I did go down to Friendship, to the flea market late Monday afternoon. We didn't make the rounds of the entire place, but just hit the largest flea market area. By the time I did that I was pretty much ready to come home. I enjoyed the walk, though. It wasn't too hot and I felt good about getting in some exercise. I did see a really cute tin bread box that Mark and I both liked, but we both thought it was too expensive. We're thinking we might go back down later this week and see if the price has come down any or maybe even try to talk them down some. I don't know. I've got to see my oncologist tomorrow for a routine appointment, presumably so he can talk to me about how the chemo is going. Then Friday night I'm going to a play here at our local theater called "Til Beth Do Us Part." One of my dear friends, Valarie Bennett, and her husband, Ken, are acting in it. I've seen them both act before and they're very good. Val used to be a magician, too, so she's got the stage in her blood. Oh, and did I mention that they lived in Las Vegas for a while and she used to make clothes for the male strippers? Lots of velco she said. LOL

So, I've got some things to do over the next couple of days. As tired as I am this time around, they may be all I can manage. I told Mark that doing a load of laundry last night pretty much stretched me to my limit. That's just pathetic, but the reality of this whole process. I'm trying to psych myself up to do another load of laundry tonight AND load the dishwasher! What an exciting evening I have planned... I may need a nap first, though.

Well, I suppose this is it for now. I've got a few hats and scarves I would like to mention, but I'll try to do that in another post. Carolyn told me not to buy anything, but there were just a couple of things that I simply could not resist. Plus, having two such fabulous sewers as Carolyn and Mary as my friends means they can probably just take a look at what I've bought and duplicate it with minimal fuss. Anyway, I want to post some pics of what I've got and give credit and props to those I got them from. Another post, though. I need my nap!

A final word of thanks to God for always being there, even when I'm not paying attention to Him. And to all my dear friends, without whom this situation would undoubtedly be much more trying. And of course, my big sister, Debi, whom I've been chatting with online as I wrote this. Amazing I'm still able to multitask despite the chemo brain! Yippee! And last but not least, my dear hubby, Mark, who is my rock and my best friend. And who has taken all the changes in stride and loves me just as much when I'm bald as he ever did before. He is a true gift from God and I am forever grateful for him.

Blessings to everyone, and don't forget to take the time to be thankful for what you have.

Jenn

Saturday, September 11, 2010

Quilting, Stitches, & Crafts Expo... With Friends

I went to the Quilting, Stitches, & Crafts Expo at the Sharonville Convention Center in Sharonville, OH on Thursday. It was my first real outing since starting my chemo. I've been to the grocery store, but that's pretty much it. My dear friend and Quilter Extraordinare, Carolyn (of carolynscanvas.com fame) asked me a couple of weeks ago if I'd like to go, presuming I felt like it, of course. So, we, along with our other friend Mary (who also happens to be our pastor's wife) piled into Mary's car early Thursday morning and headed off to the big city.

I wish I had the time to sit and describe my two friends. Sitting here, I have a broad smile plastered on my face because I cannot think of either of them without first being grateful that God saw fit to bring them into my life and then second being grateful for all the humor they have each brought to my life as well. They are wise, trusted friends and mentors, but they are also a fairly constant source of hilarity. I think the best way to explain it is to tell the story of the crown of thorns. (Keep in mind that I cannot do this without laughing out loud. The laughter tears don't usually start until I watch the video.)

We all attend a small, Independent Baptist Church together. (Like I said, Mary's husband is our pastor.) We usually have a Mother/Daughter Banquet each year. A few years back a group of us were getting the church ready for the banquet. There is a large wooden cross that hangs over the baptistery. Someone had given the church a crown of thorns but it had never been placed on the cross. Mary decided that she wanted it put in place for the banquet. Keep in mind, there are five of us there and not a single one of us happened to have a ladder handy. So, Mary and Carolyn put their heads together and improvised. I happened to have my camera on hand and I recorded much of the event. I was a little sick at the time and was doing everything in my power not to laugh too hard or to surrender to the coughing fit my laughter was triggering. Please, brace yourself for what is to follow.....
 
(Wiping tears from my eyes...) You have to understand that that crown had fallen off those brooms several times BEFORE I remembered that my camera could take video. I was convinced that before it was all over, our crown of thorns would be nothing but a crown of vines because all the thorns would have broken off in the countless falls to the bottom of the baptistery! But, they eventually got it up there and it is in exactly the same position to this day. (This was filmed in June of 2008.)

So, you see what it's like when Mary and Carolyn get together. This is just one of their many adventures. Needless to say, my day at the quilt expo was filled with lots of laughter, which was just what I needed. We had a wonderful time. At least I did. And when we got back to Mary's house, Carolyn reminded me that she had some food she'd fixed for me in her freezer. Mary suggested I go by to pick it up then, which was a wonderful idea because it meant I didn't have to cook today! So I followed Carolyn home and she packed up a meatloaf, several twice-baked potatoes, an ice cream bucket of vegetable soup, another ice cream bucket of chili, 2 quart jars of canned tomatoes, and a plate of pineapple upside down cake. Then we visited for a while longer before I finally went home with my army's worth of food.

We had the meatloaf and potatoes for lunch of Friday. I'm going to probably have some of the soup Saturday. Thank you, Lord, for my friends!

Here are just a few of the pics I took at the quilt expo:








There are lots more, of course. It was a really nice show with a lot of beautiful pieces of art. As I've said, I had a wonderful time. Carolyn's sister, Shirley (who has her own heavy cross to bear) had lunch with us and gave me a daily devotional book called, Streams in the Desert. She included a very sweet personal note. I love the book already.

I wish I could have gotten this posted a little sooner, but I was pretty worn out Thursday by the time I got home and I was busy most of Friday, so it's taken me this long. I have several other things I'm hoping to get put up in the next couple of days, but I do have my next chemo on Monday and I don't know how that will go. Hopefully, it'll be as easy as the first one was.

Hope everyone has a blessed day!

P.S. If anyone is interested, the music in the video is "What Grace Is Mine" by Keith & Kristyn Getty.

Monday, September 6, 2010

Count Your Blessings!

Woke up so thankful this morning. I've been feeling bad since Thursday night. I thought it was a cold at first, because I had a sore throat and my chest hurt like it was full of congestion. So I took meds to help with that and by Saturday night, I was starting to think it might be something else. My chest and shoulders were aching so bad. All the muscles across my neck and shoulders were drawn up like bow strings. Any deep breath caused a pain in my upper chest and shoulders. I was really starting to worry that something was seriously wrong. The fever I was running never climbed above a degree, so by Sunday I was pretty sure it wasn't an infection or a serious cold. I hadn't taken anything for the pain because it would also have masked the fever. I got fed up with it on Sunday, though, and finally took some Tylenol. It helped a lot. So I waited well past the 6 hours that it can be effective and checked my temperature again, which was still low, and took some more. Before I went to bed last night I took another dose and I woke up feeling much, much better this morning. I haven't taken anything at all today, and still feel fine.

So, I don't know exactly what was going on, but it seems to have cleared up. I will, of course, speak to my Dr. about it, but I'm just so thankful that it is better. I was really afraid for a while there that I was going to be spending the weekend in the ER. That is NOT something I wanted to do! Thank you, Lord, for hearing my prayers!

Blessing #2: I realized late last night that things are mostly tasting normal to me again. I've counted myself blessed already because I haven't had a particularly bad taste in my mouth and have not developed any mouth sores, both of which would have made eating unpleasant. The only real issue I've noticed is that nothing seems to taste right. Actually, it's like my taste buds are all dulled. Nothing has the flavor it should have. I noticed a few days after chemo that I was kinda sensitive to pepper and thought I might have to avoid it, but I've actually been using more of it and salt and other spices in an effort to make food taste like something. I have this Mango/Orange juice in the fridge that I usually LOVE but it hasn't tasted like anything at all for a few days so I haven't been drinking it. I had some last night and while it may still taste a little "weak," it tastes much better than it did before. So I plan on trying to finish it off over the next few days before I get my next chemo and have to start the whole process over again. The taste distortions can be compounded with each treatment, so I want to enjoy my juice - and anything else I like - while I can just in case the dulled taste lasts longer next time.

There are, of course, countless more blessings in my life. My husband, friends, family, even the medical doctors and treatments are a blessing. When you get that diagnosis of cancer, it would be very easy to sit there and start asking, "Why me?" But I've chosen to instead be grateful that my cancer isn't worse, that I live in a time when we have treatments that are far superior to what was available just a few years ago, and when I have resources like the internet to help with my research into my disease and to find others who have been there before me and can offer invaluable advice, support, and encouragement. I've mentioned it before, but I want to do so again. The Cancer Survivors Network has been of TREMENDOUS help to me. Visit them, even if you don't have cancer. You will find an amazing group of people there who refuse to allow a cancer diagnosis to define who and what they are.

I also want to mention an item that I ordered off the web and received Saturday. I've seen the poem before, the first time when my mother-in-law was fighting brain cancer, I think. I loved it's message and after I got my diagnosis I did a web search and found this pendant at Sticky Jewelry, Inc.

I had to laugh when I received it, because the print is very tiny, though I can read it. Mark took one look at it and handed it back to me. The pic is much, much larger than actual size, but I'll still reprint the words below it, just to make it easier for anyone out there with less than stellar eyesight. :)



What Cancer Cannot Do...
It cannot...
invade the soul
suppress memories
kill friendship
destroy peace
conquer the spirit
shatter hope
cripple love
corrode faith
steal eternal life
silence courage

Friday, September 3, 2010

Sicky Sickness Stay Away

Okay, the dreaded chemo crash that I expected on Wednesday hasn't really manifested itself. At least, not in any way that I expected. Considering the whole "wrapped in cotton" feeling my brain had on Wednesday, I expected to be counting myself fortunate to string together more than a few grunted syllables by Thursday, or Friday at the latest. But then I felt much better on Thursday. Not quite so tired, not so "foggy." So Mark and I ran a few errands that needed to be done.

First off, I reckon I should mention that Mark convinced me to buy some masks at Wal-Mart back when we were doing The Great Chemotherapy Shopping Extravaganza. The idea came not from anything we were told officially by any medical person, but from a little old man who came into the treatment center with his wife and wanted a mask to protect himself from the rest of us. So, I looked at Mark and thought, "that's probably not such a bad idea." Mark, of course, was all for it. He is a germaphobe at heart. So, we got the masks but I have not put them in my purse and so have not actually used one while out in public. As logical and rational as it is - even smart - to protect myself from all those germs out there, I just haven't quite been able to put myself into a frame of mind to go out in public looking like some paranoid Asian during the bird flu scare.

So, what have I gotten for my pride and hesitation? SICK! Yes, that's right, I'm sick with some kind of pesky chest cold. I felt the beginnings of a sore throat Thursday night, then woke up feeling much worse on Friday morning. I had a temperature of about a degree, which isn't much of course, but it was enough to worry me because I knew it meant I was really sick. The instructions we're given as chemo patients is that if we get sick - as in running a fever - we are NOT to treat it with anything that will bring the fever down. No Tylenol, ibuprofen, Alieve, etc. This is because they will only mask the fever, lowering it artificially without doing anything at all for whatever is causing it. So we are to watch the fever, check it often, and if it hits 101, we go directly to the ER. Do not pass Go, do not collect $200.

My fever has never risen above a degree or so, which I am so very thankful for. I do not want to wind up in the hospital. I do not want to have to postpone any of my treatments while I try to fight off some bug. I called the Dr's office Friday morning, just to give them a heads up about being sick, then started rummaging through the medicine cabinet looking for something to take. Everything - and I do mean EVERYTHING - was expired! I guess I haven't been really sick for a while. I did have some NyQuil, but it contains Tylenol, plus alcohol, so I couldn't use it. Plus, my chest was aching, leading me to conclude that what I really needed was an expectorant to break whatever was in there up. So we made a trip down to CVS, I paid way too much for something I could have gotten at half the price at Wal-Mart, and I started taking some Mucinex. I am also using my inhalers, which have at least helped to keep my chest from feeling so terribly tight.

I've been taking the Mucinex since Friday afternoon, and I can feel it finally working a bit. My chest still aches some, but I can tell that I need to start coughing this mess up and out. Not looking forward to that, seeing as how coughing is uncomfortable. But I gotta do what I gotta do.

The long and short of this whole thing is, I reckon I will be wearing a mask in public from now on. At least I'll wear one any time I'm in a crowd of any size. I am already carrying around hand sanitizer and antibacterial wipes, this will just be one more thing to add to the circus. That's the funny thing about this whole process. Pride is one of the first things to have to get chucked out the window. The whole hair loss thing bothered me. Still does a little. But ultimately, I realize that I don't much care what I look like so long as I feel half-way decent. I joked with Mark that I ought to shave my legs but I'm holding out for the chemo to finally kick in and save me from having to do that chore again for a while. My legs are hairy and I don't care.

Hmmm.... sing with me (to the tune of Jimmy Crack Corn):

My legs are hairy and I don't care,
my legs are hairy and I don't care,
my legs are hairy and I don't care!
Chemotherapy!

Thursday, September 2, 2010

Warning! Chemo Crash Ahead!

Monday and Tuesday were so nice. No sickness, no tiredness, no achiness, no chemo brain. And then I woke up this morning...

To be fair, I'm still not feeling too bad. My lower back is aching a little, possibly from the Neulasta shot on Tuesday. I'm much more tired today that I have been. Wears me out to do much of anything. Still no nausea, thank the Lord! But the chemo brain has made an auspicious appearance.

I can't really go into a lot of detail seeing as how this is a public blog, open to all the world to read and I don't want to be one of those stupid people who tells the entire world when the house will potentially be empty or when I might be home alone. I have guns and a LARGE Chow mix with an attitude, plus 2 Bulldogs, but these days you just can't be too careful. Sad, but true.

Suffice it to say that I woke up, took a look at the time projected on the ceiling from Mark's clock, and woke him up to tell him he had to get up. This was, unfortunately, not true. For some reason, my chemo addled brain saw one time when it was actually another. We went back to sleep after straightening out the mistake, then after Mark went to work he called to check on me and told me he was telling people the chemo brain is setting in.So glad he's out there making me look good!

Anyway, I don't feel bad, per se, but I feel far less perky than I did the previous 2 days. I was hoping the Decadron (steroid) pills would keep that steroid high going at least through tomorrow, but no such luck it seems. Monday and Tuesday must have been a result of the massive dose they give me right before administering the chemo.

We'll see what tomorrow brings. Hopefully, it won't be any worse than today. But even if it is, I know God will get me through it!

PS: a quick shout out to my precious friends: Carolyn-who is working on getting me set up with some scarves and hats made by her very own hands (mine too, if I can work up the engergy); Anita-who keeps calling to make sure I'm okay and to let me know she's still praying for me; and Val-who is always ready to take me anywhere I might need to go, or maybe to bring over some dinner or anything else I might possibly need. I am so very, greatly blessed to have these women in my life. Thank you, Lord, for the gift of their friendships!

Wednesday, September 1, 2010

The Lydia Project

I have spent a lot of time on the Cancer Survivor's Network and through them learned of many resources out there for cancer patients. I'll talk about some of them as I get more experience with them. One of the first that I have dealt with is The Lydia Project. This is a Christian group, based in Georgia, who will make a small tote bag for any woman going through cancer. Each bag is handmade and unique. Here is their biography:

About Lydia

Lydia provides free services to women facing any type of cancer anywhere in the world. This support includes ongoing correspondence and encouragment every month for at least twelve months. Every woman receives a handmade tote made by the loving hands of volunteers and filled with encouraging items.
In many cities nationwide, physician offices and hospitals distribute Lydia totes directly to patients. Visit Lydia'sHealthcare Partnersto see if your community is already a part of the Lydia network. Women in all 50 states and many other countries have received totes and support from Lydia. Dedicated volunteers serve from all over the nation providing encouragement to women and their families.

Lydia also provides rent, utility, and prescription assistance to women who are unable to afford these basic expenses while undergoing cancer treatment and who reside in Aiken, Burke, Columbia, McDuffie and Richmond Counties.

The Lydia Project is a grassroots 501(c)3 non-profit charity begun by a group of Augusta, GA businesswomen in 2003. The project is named for Lydia, who appears just briefly in the Bible. (Acts 16: 14-15). She was a successful businesswoman in the trade of purple cloth. Using her gifts, Lydia extended a hand to those in need. In the same way, Lydia's purple-handled totes include a network of support and are monogrammed with "faith" "hope" or "love"~ ensuring women and their families are not alone during such a devastating time.

The Mission of The Lydia Project is to serve women facing cancer by providing hand-crafted tote bags, prayer and ongoing support.
I requested a tote from them some time last week and it arrived on Friday, August 27. Here is what I received:
Here is the tote. I had the option to choose a tote that said either Faith, Hope, or Love. I chose Faith.

Here is what was inside the tote: pamphlet about The Lydia Project, a Journal, some lotion, tissues, pens, and a personal letter letting me know they would be praying for me.
The prayer request card that was tucked into the front pocket of my tote, along with a note letting me know the name of the person who made it for me.
I was so impressed with this group. Just to know there is someone out there who cares enough to make the effort to help people they don't even know is a comfort in this day and age of "everyone for themselves." The Lydia Project is by no means the only helpful service out there, they are simply the first I dealt with and received a response from. I will mention others as they come along.

Please, if you have time, visit The Lydia Project, and see if you might be able to help them in any way. They are providing a wonderful gift to cancer patients everywhere.