Tuesday, December 31, 2013
My memory recall only works a little. I know that there is information that I do know and it's like it is just there beyond my reach...but I am positive I know the information! I just can't grab it! That is beyond frustrating! Then there are the moments were the information is in my head but I can't get it to come out of my mouth...like it can't figure out how to get from my head to my vocal chords...and should it reach them, my vocal chords can't seem to remember how to produce the sounds! Then of course there are the moments where I forget to do something. I forget to turn off the stove, I forget to do the simple task I'm asked to do...sometimes while I'm on the way to do it!! Forget asking me to do something more then five or ten minutes from that moment! This is NOT who I was!
People keep telling me to be patient...that if I give it time everything will be back to normal. I suppose I might be a bit impatient. Even though I went through it, now that I'm not on my back almost all day every day and feeling sick and beyond exhausted I guess I assume it is all over and all the side effects. My hair is slowly coming back in...although I still look like a boy with a VERY short buzz cut. I can do more and am driving on my own...but still can wear myself out faster then is considered close to normal. I guess my question is...when are the side effects really gone? Or are there some that just never go away? I really, really want my brain back! I feel like I am operating on half my ability to think clearly!
It's like I'm half way between treatment and being completely better...and I'm stuck and can't seem to move forward. Probably I'm still moving forward but I can't see it. And that is maybe almost as frustrating as having half a working brain!
Wednesday, December 11, 2013
However, today, two months after chemo, I finally sewed ON MY OWN! Thats right! And I didn't sew my fingers and sewed in a relatively strait line! Granted, I was sewing squares together for a blanket top but making those squares come out even and lined up properly is harder than one might think! But I did it!!!! LOL!!
So happy to be back to sewing...just one more thing I am reclaiming!!!
Monday, December 9, 2013
From the beginning of all of this back in April I have managed to hit the minority reaction to almost everything!! And I also heard the word "but" more than I wanted to as well! Before my first procedure, the doctor told me that while there was a small chance of cancer being found that the percentage was something like 5%. Pretty good odds right? A 95% chance I wouldn't have cancer. Hello 5%!! Then came the question of having a partial or whole hysterectomy. Again, the chances of the cancer spreading beyond the uterus was very small. But I decided to have the whole hysterectomy. That was God having my angel whisper in my ear. I thought I was going to only have to worry about it moving to the lymph nodes. Those were clear (thank God!). That was when I heard the word "but". It only went 3/4 of the way through the uterine wall...thats good! BUT, it moved to make a small tumor on an ovary. Because it moved, chemo was strongly recommend. Six treatments of pretty nasty chemo followed. An experience I NEVER want to go through again and wouldn't wish on the worst person in the world!
So when I pulled out of the delirium and haze of my last chemo (and that took about 6 weeks before I felt like I could maybe do every day things without collapsing!) I had this CT scan to look forward to. The logical side of my brain was agreeing with everyone around me...that there shouldn't be anything on the scan. But the emotional side of my brain was still very whiplashed from being smacked down physically and emotionally over and over again since April! I just couldn't believe it was going to be over! I kept seeing myself hitting that 5% of people who end up with cancer from Endometriosis and the random movement of the cancer!
I will admit that up until this morning, my brain was refusing to calm down and just believe it would be ok. My mom managed to get me out of bed to go to 8 am Mass at St. Joe's though and I think that was the push I needed to get over that unbelievable fear I couldn't ignore. I'm not saying I was suddenly filled with peace...but more like a slow acceptance that God was in charge and had everyone from the Blessed Mother to my patron saints, guardian angel and older brother as well as everyone else all my friends where begging for intercession, asking Him to bring me out of this! It's not that I doubted He would bring me out where He wanted me...it was how much longer I was going to have to go through this! I know God never gives us more than we can handle and I think He was letting me know just how much I can handle! Maybe not always gracefully but He knows.
Because of this, as the day progressed and I found myself in the car with my parents heading up to Saginaw, the panic was reseeding and a sense of almost calm was winning. I say almost calm because I am a worrier by nature so it would have been a complete miracle if that worry had been totally pushed aside! As soon as the doctor walked in and asked me how I was doing I told him I would be doing so much better if he told me that the scan was clear. He said it was clear! No evidence of cancer!! On top of that, he didn't see any reason that there would be anything to worry about in the near future. No doctor will ever say the cancer will never come back...but they will let you know if they were concerned or not and he wasn't!
I go in for exams every three months and another CT scan in 6 months. This is going to be a regular routine for the rest of my life but I can handle that! It means that every three months I am reassured that I am ok!! So now I sit here and look around me and ask God; Whats next?
Thursday, December 5, 2013
So in trying to not think about Monday I am thinking of the things coming up. Like Christmas and getting ready fro that. And maybe getting back to Sunday Mass!! I am told I can go into public without my face masks any more and I have been dipping my toes into that lately...but it still freaks me out! Something tells me a lot is going to scare me for a little while. But as I stood in a jewelers shop the other day with no mask on, it felt a little liberating! lol!
Also ahead of me is a trip to Bronner's after New Years to get my 2014 Christmas ornament and a few more nice ornaments for my collection. I decided two years ago that all my Christmas ornaments I buy will come from there. I managed to get a star for my tree there last year and I love seeing all my ornaments on my tree! While I won't have my own tree this year, I will next year! Lol!
Then, come February, I'll get back to VA and see all my awesome friends out there! Including my best friend since we were 8, Marie!!!! Hang out with her and her family and then cruise down to Front Royal, get my mexican hot chocolate (thank you Krystal for addicting me to that!) and see all my friends there! Lily and Pat and Colin and Sarah and all my Christendom peeps! See what Mirandum Pictures is up to in their new offices and walk up and down Main street again! And of course I can't miss my Northern VA friends...especially Ginny and Carolyn!! And all my St. V's people too! And I am really looking forward to a fancy, steak dinner to celebrate graduation and kicking cancer with my friend Christopher!
On top of all this I am getting back into making crafts, writing and even starting my own magazine! Lol! God willing I can get enough people to help me with the articles! But lots to look forward to!! Monday WILL give me good news and I can put all this fear behind me!!!
Thursday, November 21, 2013
Wednesday, November 20, 2013
Saturday, November 16, 2013
Sunday, November 3, 2013
Tuesday, October 29, 2013
Saturday, October 26, 2013
Well, a week and a half away from my last chemo and mentally I'm raring to go! Physically is a completely different story! It isn't that I can't do anything...but I have to go slowly, still rest A LOT and pace myself.
This I think will frustrate me the most now. I'm the type of person who, when one thing in life is done, I'm ready to move on to the next right then and there. My philosophy has always been, if you know what is next...why wait? I always just jumped into the next thing. This time though, I can't jump. I have to slowly walk, and then rest, then slowly walk some more. My brain may be saying full speed ahead but my body is trying to give it a reality check. It isn't easy getting those two to agree these days!
So, I'm taking things one day at a time. Trying not to get frustrated. But also trying to move forward every day too. Even if it isn't at the pace I want!
Tuesday, October 15, 2013
A milestone was reached today...and I wasn't even sure I was going to reach it yet! I finished my last chemo treatment!
I've been fighting a sore throat since Sunday afternoon. I think a little miracle happened! Here is the power of prayer. A sore throat is usually visually indicated by at least one of three things. White patches, redness or swelling. I was at the point where swallowing was painful! And yet, every time my throat was checked, there was no visual indications that I was fighting anything! So, your prayers, Mass and a blessing from a first class relic of St. Theresa of Jesus worked and I was able to take my last chemo today!!!!
I've been asked a couple times today how I feel and to be honest...I don't think it has fully sunk in yet! This is a huge step towards recovery but I also acknowledge it is but one step. I'm totally psyched that it has finally arrived, don't get me wrong! But there is still a long road ahead and more fighting to do. The icky recovery of the first week after chemo. The long recovery from chemo and even some more recovery I couldn't fully do from my surgery. Also, the continued fight and appointments to do everything we can for it not to come back! That's a life long project. But if I can make it through this...I can make it through anything!
I'm going to share some pictures I've been plastering on Facebook. They are from today and include some of the people who have helped me through all of this.
One is with three of my awesome, amazing, loving, caring and dedicated nurses! Without these women, and many more like them at the Cancer Center and hospital, these past months would have been completely unbearable! You guys always make me feel better, lower my anxiety and build me up to be able to fight as hard as I can! Love you all!! I'll be coming back to visit for years to come!
Another photo is of me and Dr. Ron. I have many doctors and each is important. I was allowed to take my chemo MUCH closer to home and after my 2nd chemo, Dr. Ron took over as my supervising oncologist. His regular check ups, kind frankness, encouragement and honesty were always helpful in building up my confidence!
A very big THANK YOU and I LOVE YOU goes out to my brother Chris and and my sister-in-law Margo! From literally day one of this whole ordeal they have both been there for me. From kneeling next to me on my kitchen floor to leaving work to meet me at the ER to holding my hand and making me laugh through two surgeries to helping me through the trauma of losing my hair and being there with love and support through all the chemo! Today they surprised me by coming to my last chemo and hanging out with me!!! They pulled me out of my Benadryl haze and made me laugh! That visit meant so much to me as well as everything they have done for me! I love you guys!
Another picture is of me and my mom. I'm saving a separate blog about my parents though. That will come after I've gotten up out of this chemo:). Rest assured though, without them, I would be a total wreck!
I'm done with chemo but the fight goes on. If I can make it through this part though, I can make it through anything! I have a request of you. Reach out to the cancer community around you and be there for someone going through this horrible thing. The physical connection in friendship is important to recovery! I know that is going to be a big part of my future!
Monday, October 14, 2013
It's almost here...the beginning of the end! Tomorrow is my last chemo. I'm hitting it with a bang too! A sore throat that has absolutely no visible indication that it is sore! Only what I feel. They will do a double check before starting to make sure I'm still ok to move forward.
The thing is, as anxious as I am to go through all this again...I also would be afraid to have to postpone it! Then I would live through the anticipation even longer! That and my goal has been to get through this with no delays and no ER visits! One more week (I have to pull out if it still) and I'll make both those goals! Please Mother Mary! Let me feel better tomorrow and hold me tight during the days after!
Friday, October 11, 2013
There are important things a person has to do when going through all of this. One is to take those moments, even if they only last a short time, that make you smile and enjoy them as long and as much as you can!
Today I found myself outside in the front yard kicking around the leaves on the ground. They make that lovely rustling sound as they move about! And then there is that distinct Autumn smell (and no, I don't mean pumpkin spice!) that wafts through the air as you stir up the leaves! The colors go from yellow, to orange to red and the sun shines through the thinning branches and warms you up!
Moments like this pull you out of yourself! For a short time all is right with the world and you can't help but smile and kick up those leaves! And the great thing is, even though it may not feel like it sometimes, you know a moment like that will be repeated. You don't know when or where or how but it will surprise you, take you out of yourself, and make you smile!!! :)
Wednesday, October 9, 2013
I know that from the beginning that is all I have been begging for. To have my life back To be able to move forward. I think, with my last chemo only a week away, I am battling the usual fears but also this new one. I've been in something of a bubble since April. 98% of the people I have been around since April have been people from the cancer world. My parents, my doctors, nurses and the other patients as well as the staff at the Cancer Center. It's not that I haven't been around any other people but...it's different.
When I'm out in public, I hide behind my surgical mask and under scarves and hats. I know that anyone looking at me knows I have cancer. But I think, in order for those looks to not drive me crazy, I've just simply drawn myself behind that mask. I have had 3 friends visit me, but they were either friends who have had to deal with cancer closely or someone who has been in my life for a very, very long time. My cancer has taken over and made itself my identity. And I don't think that is going to change when this all over
That in itself is pretty scary. You go into all of this knowing who you are and realize somewhere along the way that you are no longer that person. And that's ok I think...only it means starting over and rediscovering who you are to yourself and everyone around you. I love my family and my friends but most of them I haven't seen since before this all started. They don't know who I am anymore and I sometimes wonder if they don't know how to act around me anymore either. And that, I think, is the biggest fear I am fighting now. Whether the cancer comes back or not, I know how to fight that. I know who I am in that world. I am a warrior against this terrible thing and I am a victor no matter what. I'm scared and terrified of the whole process. I'm uncertain and sure at the same time. I pray for strength and bravery through clenched teeth, tears and anger. I refuse to give up even when my mind and body are screaming at me that there is nothing I can do. I am determined that I will somehow be able to touch the world. To reach out and help someone, somehow. To make a difference. But who am I to my family and friends?
Lets face it, most of our perceptions are physically based. The people in my daily life right now are the ones who understand who I am. Who I know, without a shadow of a doubt, know me for who I am. One of the biggest things that has been pulling me to get through these treatments has been a planned trip to Virginia to see all of my friends out there. People who have been a big part of my life until this all started. By the time I get out there, it will have been a full year since I saw them. Last time I saw them I had strength, health, an assurity of where my life was heading and a plan that we were all rooting for. And, I had hair! When I see them again, I'll still be a lot weaker than I was. I won't be able to go without stopping. I'm not even sure if I'll be able to drive again by then. And...I won't look anything like what I did. Yeah, a little thinner. I've been blessed to not be wasting away. But also, no hair. It sounds petty, I know, but honestly I think it is the biggest battle for me in stepping out into the world again. Everywhere I go, the missing hair is a screaming, neon sign that I have cancer. That I am forever changed. I'm afraid of how people will accept me. I'm afraid of seeing that look of pity in their eyes. Afraid of hearing the platitudes that sound good to them and are like nails on a chalk board to the person receiving them. I'm afraid of friends unable to talk to me for whatever reason. I've lost touch with so many people because of this, I'm afraid they won't know how to restart that friendship. I'm afraid of loosing connections with family and friends because they are afraid.
So, as much as I am looking forward to this trip in January, I'm also terrified of it. I'm not the person who was there last year. I'm still learning the ins and outs of who I am now myself. And I don't think I am the only person going through this who is dealing with this either. This is just too big of a change for it to just be me. I know other cancer patients are having to rediscover who they are...and the people around them have to learn who that new person is too and accept them. Move on with them and rediscover their connection.
Tuesday, October 8, 2013
The trees are changing colors and adding a wonderful splash of color to the Fall pallet!! Weather like this, while a bit chilly on a bald head, is the perfect weather for someone not feeling well! It makes you feel better just looking outside! I can't stress how important having a seemingly small thing like good weather that can change your outlook!! That change can get you over a difficult time or make you realize the world really isn't coming to an end and there is something to look forward to! Sunshine is a very important element to fighting this battle!!
Sunday, October 6, 2013
So far, since April, the surprises I've received have not been very good. Surprise! You're anemic! Surprise! You need a little surgery! Surprise! You have cancer! Surprise! You need another, bigger surgery! Surprise! The cancer moved a bit so you need chemo! Needless to say, these are not surprises that help make a person feel good.
However, there are surprises that are good and I was greeted with one earlier this week! On a day I'm normally pretty out of it, a knock came at the door and....Surprise! It's my brother in law David and my two nieces Lexi and Becca!!! This was a surprise I could handle and loved! While I was still tired, and had to lay down for a bit during the visit, I was never happier!! Happiness and excitement can wipe away exhaustion for a little bit and it was so good to see the three of them!!! I've decided...from now on, I want surprises like that! Love you guys!!!
Sunday, September 29, 2013
Well, I'm slowly coming out of chemo 5 and it has been far from good. Thursday, Friday and Saturday were spent in bed, just begging God for this to be over! Today, Sunday, I've been able to get up for short periods of time and am even about to eat my second baby egg if the day! And I'm still praying that this be over!
Exhaustion, complete loss of appetite and all the other unmentionable things chemo causes seem unbearable sometimes! I have to say, without my parents, I'd be more than a wreck! Fingers crossed i can graduate from baby eggs in the next couple days!
Tuesday, September 24, 2013
Well, I was going to do another video at chemo but my tablet went on the fritz, turned off and now won't turn back on! So, looks like it needs to go back to Best Buy for some investigation! Fortunately I still have my phone...but no access to my Kindle or Netflix!!
Today has gone ok. I'm on my last chemo bag for the day. It has been a very tired day because we switched up some of my anti nausea meds and one makes me SLEEPY! I'm usually buzzed by now from steroids but I'm more mellow and tired.
Other than that it has been ok. Dozed a lot but considering I got only a little sleep last night and was up early that's good.
So, once I'm done today I will only have one more chemo!!! So, even though things are getting rough, the light is now visible at the end of the tunnel!!
I might try to do a video when my tablet is working and I'm feeling better:):):)
Sunday, September 22, 2013
I know I haven't written much lately. I think part of me has wanted to forget what I'm going through for awhile and not acknowledge it! Which is hard to do when the bigger part of your brain won't shut up about all your crazy fears!
But this week hasn't been too bad. I haven't gone out except for blood work but I've been outside a bit more:). It was so great to see my friend Annie who came to visit!! It has been years and it was so good to just sit and talk like everything in life was normal! Then we went out and picked apples in the back yard and while it totally wiped me out....it was so worth it! Because for a few hours, I felt normal!! For a few hours, it was like my cancer and the chemo didn't exist!
Tuesday is chemo 5. Part of me wishes we could just stop...no more! But then I remember...I choose to do this and I have to finish this. So as much as I would love to run away and hide, I have to suck it up, do two more chemos and deal with what comes after each one. But also remember that the sick feeling WILL eventually pass and I'm almost there! Please dear Lord, help me get through this two more times!!
Wednesday, September 18, 2013
After I had my labs done this past Monday, I got a little shaky. A combo of my anxiety over blood draws and the blood they draw...always happens to me. The nurses have a chocolate drawer that I can usually dig through to help with the shakes. Sadly, it was a bit depleted. So I asked my mom if we could get some chocolate and bring it back for the drawer.
Well, as what usually happens, a small idea turned into a big idea and we landed at Lances Bakery in town. One box full of doughnuts, muffins, cup cakes, lemon bars and scones and a few bags with six giant cookies later, we headed back to the cancer center! I think the goodies were a hit for not just the infusion room but all the other doctors and nurses on the floor too!
I freely admit, this made me feel good!! I haven't felt that good in...well...months! In fact I was feeling so good I found myself walking at my normal fast pace...something I haven't done since the beginning of April! My legs weren't too happy with me afterwards but for a few minutes...I felt NORMAL!!!
I know from experience that sitting in those infusion chairs all day, for patients and family members, is not easy! Physically, mentally and emotionally, iy is rough! So when someone comes in with a surprise it brightens everyones day! For a little while, you find yourself smiling and laughing and feeling good:). This is definitely something I want to continue when my chemo is done!
Sunday, September 15, 2013
The number of emotions a person feels while going through all of this is staggering sometimes! And never are these emotions small. I think one that I've been struggling the most with is isolated.
Yeah, that is an emotion. It's actually a whole slew of emotions that culminate somehow in that one word. Sadness, fear, loneliness...actually, I think loneliness is the best word for it. I'm daily with my parents and I know without them I would be completely alone and adrift in this storm. But that feeling is still there.
Because of a combination of how tired (and sometimes rotten) I feel there is no desire to leave the house. And because I have to be careful of not catching any bugs (and I'm permanently exhausted) it is hard to connect with the few friends I have within driving distance. And having most of my family and friends living hundreds of miles away adds to it all.
I have so many wonderful friends and an amazing family offering prayers for me, and those prayers are essential to me getting better I know, but in a way, it contributes to the isolation. I think so many people are so focused on assurance of prayers that they forget that even Jesus needed the physical comfort of His friends.
Prayers are so very important, but I think people forget that Jesus had his friends with Him in the garden for a reason. Physical comfort of any type is just as important as prayer. I have one friend who doesn't say anything to me but he is praying for me...which i greatly appreciate..and only says that if i contact him. Nothing else. This is the same friend who begged me not to leave VA to go back to school. And since this all started...I only hear from him when i contact him. I love his prayers...but I need his support and support of all my family and friends.
I know friends and family can't come from out of state to visit me but that isn't the only way to break my isolation. A letter, a text, an email. More than once. And saying more than I'm praying for you. I know you're praying for me! I love those prayers! But I need YOU! I need you to mentally break out of this isolation if not physically. I need my friends and family! Please!
Thursday, September 12, 2013
This has been a rather difficult chemo recovery. I truly discovered nausea for the first time and spent two days in bed not eating and several more days in bed slowly starting to eat again. In fact, I'm still spending more time in bed than out but am back to eating enough to sustain a person!
Last night I found myself talking to my mom about my fears and how they seemed to be all i could think about. She very wisely told me that when that starts happening it is likely the old boy wiggling his way in trying to stop me from fighting. So we started talking about plans for after chemo.
I realized I had stopped making concrete plans for afterwards...being too afraid I would have to cancel them for some reason. But I need to pull out of that and start planning again! After all, my last chemo is only a short 5 weeks away now! And I'm determined to conquer this unwarrented fear that the doctor will find cancer some where else now!
So things I'm definitely planning for after chemo!!
1. Pumpkin carving on Halloween!
2. A birthday / chemo is over party the weekend before Thanksgiving!
3. A trip to Virginia for New Years and a much longed for reunion with friends!
4. Walks as I regain energy and strength through the fall colors!
5. Clothes shopping for cloths that fit me!
6. Being able to sew again!!
7. Visiting my brother and his family in Battle Creek! (miss you guys!)
8. Seeing as many family members as possible!
9. Gong to hang out with my grandma a lot more often!
10. DRIVING MY CAR!!!
11. Going to church on Sunday!
I'm sure there are so many more things on the list that will get added too:). And this isn't even my Bucket List! This is my Lets Get Back To Normal Life list!!
Tuesday, September 10, 2013
Saturday, September 7, 2013
I didn't want anyone to think I have disappeared. For the first week after chemo I'm pretty wiped out. Probably doesn't help that Zofran and Benadryl both make me sleepy:). I'll be back on blogging more hopefully next week! Until then, I'll be praying for you all! Less than 6 weeks until my last chemo!!
Wednesday, September 4, 2013
Hello all!! Along with a picture from today's chemo is a link to my youtube video I made today on a little exploration outside of the infusion room!! It only took me this long to find out that you can walk outside in the pretty little garden just outside!! Lol!! Hey, what can i say...the chemo makes me slow! Lol!
So mom got a crash course in using the video function on my tablet and voila...a very armature but heartfelt hello from yours truly!! I am coming to the close of chemo 4 and am properly hyped up on the steroids given to me to keep me from having reactions. Trust me... starting tomorrow with a combo of Zofran, Benadryl, my white count shot and crashing off the steroids...it isn't very pretty for the next five days!!! Living on oatmeal and peaches and water and spending a lot of time in bed!!!! Oh yes, and the Tylenol for the bone pain. Ever had your bone marrow forced to grow new white blood cells?? One word to describe....OOOUUUCCCHHH!!! I could have used another word but it wouldn't be lady like!
Well, my last chemo just beeped so I better wrap up! Not sure if I will blog for a few days but will try!!
Tuesday, September 3, 2013
Monday, September 2, 2013
This is new to me...especially over such a short distance! I have always been good at walking. I enjoy it! My legs were conditioned to it! Especially after two years of tramping all over a college campus...sometimes at a power walk to make it from one class to another! It is frustrating to me that I have reached a point where walking the equivalent of a block or so makes me want to sit down not only to rest from the tired feeling but also to ease my aching muscles! And I have discovered muscles in places that shall remain nameless!!
I wish I could say that from now on I will go for a walk every day to make sure my muscles stop their downward spiral...but sadly I know that just isn't going to happen:(. While I wouldn't call the fatigue completely debilitating...it comes close I think! So I am going to have to do some serious and hard work after chemo. Something tells me the recovery will be just as hard as the treatment! But, I am determined that the muscles will no longer hurt unless I want them to hurt!
But in the mean time...excuse me as I take a moment to vent and let the whole world know that I HATE CHEMO!!!!!!! And that I would really like my leg muscles back! Please!!!!
Sunday, September 1, 2013
It may sound silly. But for a woman, her hair is a bigger part of who she is than you might think! It certainly is a bigger part of me than I was aware of! I'm actually coming to the point where I don't like looking at myself in the mirror. It just makes me sad! The craziest thoughts go through my mind when I see my head with a sparse, almost white, fuzz on top, that sticks strait up by the way! Like, what man is going to look at me looking like this?! Forget about the cancer, which is a whole other issue that a man would have to deal with, the bald look isn't working for me! And I have no idea what color or texture it will come back in with when it finally does come back! I have nightmares of it NOT coming back in and I have to rely on scarves, hats and wigs for the rest of my life! That is not a reminder of this time I want to deal with!
I know I am looking at things not in the most positive light with this. I know, logically, that this too will pass. That my hair will grow back (fingers crossed it grows back as it was before!) and that someday I will meet a man who can handle what I'm dealing with. Doctors appointments and CT scans for the rest of my life. No biological children. And the possibility of a recurrence. And the crazy thing is, this is what jumps into my mind every time I look in the mirror and see a bald head!
I know I am not the only one who is dealing with this. And to be honest, I also work on not letting it take over. Yes, it gets to me...a lot of things do...but I know I have to work hard to not let it take over. I do notice that as I slowly loose weight, the lack of hair accentuates my high cheek bones that are starting to show as my face becomes less round:). Call my crazy, but I feel like my eyes are actually bluer! And, I finally look good in a fedora:) Granted, I think the hot pinkness of the hat helps but the no hair makes it fit better:)
I guess what I am trying to say is that while I work very hard every day to stay positive and fight this...it isn't a guaranteed win every minute of the day. It is just too hard to be that way. But, after I wipe the tears away and take a deep breath, I fill my head with all the good things around me. My parents unending support and love. My sister-in-law and her never ending support and drive to make me look my best! My bother's and sister's phone calls and text messages to make sure I'm ok and talk about silly and every day things. My niece Rachel always giving me encouragement and trusting that I am stronger than I think I am:). All my family, being there for me in their own way and my friends praying so hard for me! I am very blessed, I know. And I am grateful for that every day because that strength and those prayers hold me up. But honestly...I can't help saying it...I want my hair back!
Saturday, August 31, 2013
Friday, August 30, 2013
Listening to music helps calm me down, it opens my imagination and even though working on my book is pretty much not happening, it makes me think about it, where I want to go with it and so when my brain is not quite so scrambled from chemo I'll hopefully take off and get it finished!!! You will all like it...guarenteed! I just have to get it out of my head and written:) And music helps with that.
It's like there is a power in music that can take you out of the saddest moment and put a smile on your face. It can take you back to a moment in time in a second and hold you there for the duration of the piece. I think I need to listen to music more often. Let it take me out of the world of needles, chemo, fatigue and upset stomachs and put me in that beautiful world of the imagination!
I would like to say that from now on I am going to strive to write daily on my blog...but I know the reality is that there will be days when looking at a computer is the last thing I want to do! However, I will say that I am going to try my hardest to blog more often! In all honesty, I think it will help. I'm hoping it will at least:). See, on top of struggling with motivation, I also struggle with staying positive.
I'm told that 50% of fighting cancer is to stay positive. And I would say in general, I am a positive person. But there are those moments that staying positive is as hard as running a marathon when you have never trained for one! I am determined that I am going to win the fight I am in now...but once in a while I feel my strength slipping. I feel those fears and doubts creeping up. I wonder if this will ever really be over. If I'll ever drive my car again, visit friends, be able to do more than sit in a chair to watch movies...walk around the yard occasionally and lay down and read. I have found that writing does help, even if it is exhausting most often, and also remembering all the things I want to do again. Like sew without feeling my brain slide sideways thinking about what it takes to sew! I miss creating little bags and blankets. But I keep telling myself that this is going to change. That my strength will come back! It has been over four months of struggling and surely I can handle another two months. After which I should see only improvement. Slow, yes, but improvement.
Staying motivated and positive are two very important things I think...and I'm finding also two difficult things as well! But, I am determined. Chemo 4 is around the corner and I start the down hill slide to recovery:) Looking forward to being me again!
Saturday, August 24, 2013
This morning, as I thought about what to write about, I asked my brother Jim what he thought I should write about and his answer was one word...coffee!! Perhaps behind it was the fact he wanted some, or was looking for someone to sit and have coffee with! Something he and I use to do quite often when we both lived in Virginia and occasionally in Kalamazoo! Sadly, I am no longer in Kalamazoo with him and therefore we could not renew this relaxing and enjoyable outing:).
This made me realize just how great coffee is! While I had to stop drinking coffee years ago (caffeine gives me amazing migraines!) it has played a rather important role in my life for a long time! I have countless memories of sitting at The Daily Grind in Front Royal (and sometimes in Winchester) with my brothers and friends. Everyone sipping on coffee, or cocoa or other drinks. The occasional sandwich or wrap depending on if it was a meal time or not. But what was best about these times was sitting and talking together, sometimes for hours on end! Whether it was with one or two of my brothers or one or two of my friends (or a mix of both) I can only remember being happy!
Sometimes I would go to The Grind by myself with a book or laptop and loose myself in a story I was reading or writing. And inevitably, a friend would walk by and a conversation would be struck up for a short while.
Some of my happiest memories have revolved around coffee. The sometimes sweet and sometimes pungent aroma wafting through the air created a pleasant and homey atmosphere that made life feel good for the time you sat there, alone or with someone. So every time I smell coffee I can't help but smile! And look forward to many more memories to come, all revolving around a cup full of the dark, strong, dare I say nectar of the gods...COFFEE!!
At any rate, there are some odd changes that take place that, while I know writing them won't totally prepare me, perhaps knowing them will help some with the anxiety!
Anxiety...it is there! The crazy thing is, there isn't too much you can do about that one because it creeps up on you. However, that doesn't mean you have to give in to it! Easier said then done, I know:) I try to ignore it by doing things like watching TV shows or getting lost in a book. That actually does help. And should your anxiety make your stomach churn...keep a bag or box of mints nearby and suck on them. I can't explain it but mints really do help!!
Your brain will get scrambled! Words are hard to remember and even harder to say sometimes! This can cause pauses in conversation and perhaps embarrassment. I say, embrace it! Your brain is being pickled from the chemicals...play it up! Laugh about it! Make a joke about it! Tell people that a chemical pickling is taking place just now and you will have to get back to them about the words you can't get out ...but you're sure they get the point! Be happy when you CAN remember the words and get them out all within a few seconds instead of within a few minutes!
Fatigue will enfold you! Taking a walk can wipe you out for the day. Cleaning a room can lay you out for hours. Getting into a car and going somewhere is a huge decision! Walking through a store will make you want to curl up. THAT'S OK!!! I think the biggest change is the fatigue. Because of that it cuts down on what you can do. I've found that talking on the phone for about a week and a half after chemo is very difficult! Not only can't I focus on the phone...I get so tired trying! Getting frustrated is very normal...but then you have to find ways to help get that frustration to go away. I try by reading off my tablet (thank goodness you can enlarge the print on ebooks!!) or watching some TV shows. More often then not I need to lay down to rest but don't often fall asleep (although that does happen some too). Laying down just rests your body so keep your mind occupied! Recently if I haven't been reading I've been watching Cake Boss on Netflix! Hence my persistent craving for chocolate covered strawberries!!! But most importantly, it makes me laugh!
Interacting with people outside your house will go down! That is to be expected. You have to stay healthy and wearing a face mask for you or a guest is, well, uncomfortable. All my friends know a visit with me means they have to be totally healthy and not around people who are sick or not feeling well. It can be difficult to set up visits like that. And then the day comes and your dear, healthy friend comes over and you are too tired to do much other then sit in a chair and talk. And then you realize talking is too tiring and so you listen. Hint to all friends of chemo patients...being able to just listen really is a blessing! It is the closeness of the friend. The fact that they are willing to pick up the slack and do all the talking means a great deal! It is so easy to loose touch with the outside world during chemo. If visits aren't working, try to stay in touch over Facebook or texting. However, real letters are wonderful!!! They are a physical connection between friends. Something to be held and read over and over again. I know for me, I have one friend who texts me every day. We talk about random things or sometimes I just listen. He is like a touchstone for me. He keeps me connected to that world outside chemo. Where all my friends are. The place I am working so hard to get back to.
So yes, there are many changes to deal with while going through chemo but there are changes that are good too!
I can never say enough about my infusion nurses. Whenever I see them I always feel better! They are able to help ease my anxiety, answer my questions and make me feel good about myself and everything going on. They are a positive force in my life along with my family and friends but in a special way. They deal with this every day and they are the calm in the storm for so many people. They are an inspiration to their patients! I would never have known them if I hadn't gotten cancer and I am daily thankful that I know them!
Another good that comes from chemo is a renewed appreciation for life as well as the beginning of understanding that this life isn't the end. While I have no desire to leave this world just yet, I also am shown through my faith and through the many, many prayers that this life is a preparation for what is to come!! Such an amazing future lies before you but you need to see your present. What is around you right now! Because what is around you is the creation of the One you will spend eternity with! God's creation is this world and we so often don't see it because we are so busy with what we call life. While I will be the first to admit that there are practical things in life that need to be met...there is also so much that we should see! The sun shining on a green field or sparkling water! The mountains that range from the stately, aged Blue Ridge to the younger, alpine peaks of the Rockies! The prairie that captured the hearts of the the people who broke new ground and explored our country! The wind through the grasses! The cool breeze as you stand on top of a mountain! The taste of good food! The grand, old and entrancing cities and landscapes of Europe! So much in this world that is such a reflection of God's love for us! He gave us all of this and more often then not, we take it for granted! That is something you don't do anymore when you go through all of this.
I never thought much of a Bucket List until now. But I assure you, I have one now! And it grows daily! So while there are so many changes in life from chemo, not all of them are anxiety provoking. Some of them urge you to become a better person, to turn towards God with open arms and run strait into His! To appreciate the gifts He has given you in your family and friends and in His creation! Embrace Him and His creation for as long as you can! This is a good change you can look forward to!
Tuesday, August 13, 2013
As my day of chemo comes to a close, and the steroids are making me climb the walls, I settle back and think happily about the fact that I AM HALF WAY DONE WITH MY CHEMO TREATMENTS!!!!!!!!!! I'm not excited or counting or anything!! Lol!!!!
I had a meeting with one of my dozen doctors today and he seemed satisfied with how I am doing:-). That helps me feel good:-).
I had to take a picture with a sign...the sign will be bigger when I'm completely done:-).
Today is dads last treatment with me. He is going back to teaching before my next chemo. Sad but I'm sure he will be happier working then sitting with me and making sure I don't have a reaction. But I love the fact he does sit in that chair with me:-). I honestly could not be doing this without mom and dad! It would just be impossible!!! Their support, love and ability to put up with my crazy behavior is more than I can ever repay. Family is important to have around you when going through this. Phone calls, txt messages and Facebook posts from siblings make me smile and keep going each day:-). Without my parents, brothers and sisters and nieces and nephews, my attitude would not be what it is!!! Love you all so very much!!!!
As I lay here in my chemo chair, I have spent some time staring at the ceiling. They anticipated this of all patients and have painted pictures on some the ceiling tiles! The picture is of one of them in the cube I've been using.
These are simple pictures that use primary colors mostly. I like this one because of the sunshine in it. In fact, sunshine is evoked all through the infusion room. The walls are a soft yellow color with a hint of tan. The floors are light colored pergo and the curtains on the cubes pale yellow. To add to the theme, one whole wall, all the way down the length of the infusion room, is all window. Letting the sun in to pour down on whoever is sitting in the visitor chairs next to mine. In my case, it pours its warm sunniness on dad...and encourages him to take naps as he sits with me:-).
Probably the best contribution to the sunshine theme though are the nurses themselves! Jan, Kim, Michelle and Lindsey all have happy and bright personalities. They make you feel calm and safe with a word and a smile and help make this place that could easily be so sad and depressing a positive and hilarious place. I write this as Lindsey and Kim sing and laugh! How can one feel sad and scared with all of this around?!
I noticed this all because of the painting on my ceiling:-).
Monday, August 12, 2013
This may not sound like something too amazing but for the past two months, my brain has not been working properly! I easily forget simple words. I know that I know an answer to a question but not only am I unable to say the answer, I can't get the words to come to my head! Or I can get them into my head but can't get them to come out of my mouth! This is a very frustrating thing and doesn't just happen around questions but in the middle of a conversation! (As just about anyone who has talked to me on the phone or in person can attest to!).
But, for one moment tonight, the stars aligned and stimulated my brain to work from my eyes to my brain and out of my mouth...loud enough to make the sheep baa thinking someone was outside and perhaps coming their way with some hay:) So thank you Jeopardy and my awesome Russian Lit teacher Dasha!!! Fingers crossed I get a few more moments of clarity in the second half of chemo!!!
Friday, August 9, 2013
Before my second chemo was my long time friend, and "sister" Renee. We have been friends for so long that really, words aren't always necessary to tell each other we we are thinking about them. But she also knew that sometimes, you need to say or hear the words. Sitting and talking as I fought fatigue helped me more than one would guess. Having a close and dear friend sitting on the couch across from me...a place where she has set hundreds of time before during high school, and on visits home from VA and IL. I actually didn't have the energy to talk much that day but sitting and listening, hearing a friends voice and a feeling a hug from someone close to you, it is a relief and almost a balm that works far better than any medication.
Yesterday, as I close in on my 3rd treatment, I was so happy and excited to have a visit from one of my oldest friends, Angela. Friends since 8th grade, about twenty years now, so many wonderful memories came flooding back! And being able to make new memories made me even happier. A visit to the county fair and a chance to sit and talk about what is going on in our lives was just what I needed!! To have a chance to be able to look a friend in a face, admit that despite the positive outlook I have adopted, this whole thing is so unbelievably difficult! And to hear a friend say that it is ok to unload a bit, felt like a small weight off my shoulders!
I don't want to constantly be talking about the difficulties and the fears I have. But to have a chance to get some of that off my chest face to face with a friend who understands, doesn't offer platitudes and just listens is very cathartic! And then to be able to drop it all, and go have some fun. Whether it is just sitting in a chair talking about all different kinds of things, or going to a fair and talking about the great and wonderful world of The Little Green People!!! I don't care how old we get, those memories made in childhood and young adulthood will always remain precious and always be something that can pull one out of sadness and fear. But to remember those things and create new memories, you need to see your friends!!
I know I am counting the days not only for this chemo to be over and behind me but also the days until I can make it back to VA and see so many of my friends! Counting the days until I can go to IN and IL and see close friends there as well. To know that I can travel without the fear of getting sick! To be able to walk in public with my friends without wearing a mask! To continue to make new memories with friends so that years down the road, old and white haired and sitting on a porch, the kids walking by think we are going a little batty as we laugh old lady laughs at the ridiculous and wonderful memories we shared together! And thanking God that all those years later, we are able to laugh about and share those memories with one another.
While I don't exactly know what the future holds for me, I trust in God that it will include many more visits with friends and many more new memories! In the mean time, each visit is going to something I cherish and hold on to on difficult days in the next ten to twelve weeks.
Tuesday, July 23, 2013
Well, while today was not reaction free, it wasn't as intense. Still horrible feeling but we caught it quicker. I'm hoping next time we can get the right steroid combo before hand!! And I'm able to finish all of my chemo in one day this time around!!! Just have to come back in tomorrow for my white count injection. Apparently my blood counts from yesterday were practically textbook for a chemo patient!! That was exciting!!
Today has been up and down but as it comes to a close i don't feel too bad considering:-). I'm still wiped out but able to handle it better:-). Hopefully with the new anti-nausea pills I have the next few days wont be as bad as last time. Come on Zofran...do your thing!!!!
As I sit in my chemo chair watching the bag finish up I am redetermined that i will kick this thing and never come back unless it is to bring my awesome nurses a present!! 1/3 of the way done! 2 down, 4 to go!!!!! I CAN DO THIS!!!!!!
1' Me in my chemo chair.
2' My IV pole with my last drug of the day.
3' Me and mom
4' With two of my nurses!! Jan is blonde and Michelle brunette! The 4 nurses here are the best!!!
Thursday, July 18, 2013
Tuesday, July 16, 2013
While I'm not sure what my white count is right now, I've decided playing it safe is advisable. So I've started wearing a mask in stores. The first time I did this I felt incredibly self conscience! I braced myself for people to stare at me. That didn't so much stare as made a concerted effort to look away. People very studiously avoided looking at me at all.
I don't know if that was better or worse. After a few more times out with a mask (and a talk with the social worker at the cancer center) I'm a little more confident. I'm doing this for myself. And if the bandana on my head doesn't clue them in as to why I have a surgical mask on then not much will.
But why do we look away from what we know to be a serious illness? Trust me, in doing that you aren't giving that person any privacy, respect or concern. You make them feel even more isolated! The only time a person will feel isolated in a crowded store is when they are purposely and obviously ignored.
I'm not saying go up to someone and start talking about cancer to them. But instead of turning away, meet their eyes and give then a smile and keep on going! That one small, noninvasive action helps more than you know. It breaks the isolation and gives people a good feeling of acceptance, mask and all. And maybe, helps them deal with what they are going through themselves.
Tuesday, July 9, 2013
Well, this week has been rough. Mostly from being beyond exhausted and blah from the chemo! When they said their number one complaint about chemo is how tired you get, they weren't kidding!!! Even with severe anemia, I didn't feel this kind of tired!
I've made a sign to help me count off the treatments. When I was in my last semester of college I marked off every day on my calendar, waiting for April 27 to arrive. My chemo should go through mid October and while I'll probably start marking the days again, I also cross off each chemo on the sign i made with relish....or as much relish as I can muster! The intent to be gleeful as I X a treatment is there, even if it isn't visible!
I know i haven't been blogging but to be honest, they would all say the same thing....very tired today. I'm still very tired but starting to be able to push through some. The crazy thing is, as tired as I am...I couldn't sleep at all last night! Go figure! I'm discovering that the human body is a confusing thing and it really doesn't like to be messed with!!
Hopefully I will be writing a bit more now until treatment two. Please keep me in your prayers and I'll be praying for you:).
Saturday, July 6, 2013
Wednesday, July 3, 2013
Today was the second half of my first chemo. Like yesterday, it had to go at half speed. I tend to be pretty sensitive to the meds.
Tired and hyped from the steroids. And can't sleep...interesting combination. A short blog right now...can't stay focused!
Tuesday, July 2, 2013
Today several kind men came into the infusion room with bouquets of flowers and handed them out! As I walked back to my chair a man handed me these tulips!
It is a little thing, but at that moment, I felt special. A complete stranger knew I was having a hard day and out of the kindness of his heart, he handed me tulips, and said they were for me! The rest of the day, I kept looking at those tulips until dad took them home. Every time I looked at them, I felt a little better for a few seconds:).
The kindness of a stranger I wonder was the kindness of God, letting me know through His creation that He is thinking of me:). The kindness of people around me today made this day just a bit easier!
It started off with my blood pressure reflecting my nerves and anxiety. Numbing my port and doing labs pushed the start off. Then nine minutes into the first infusion I had quite the reaction! Stomach pain, nausea, heart palpitations and the it felt like my face was going to explode and apparently I looked like a cherry tomato! I sent my dad running, someone shoved a trash can under my and in seconds I was begging someone to tell me why I it felt like my face was about to pop! Two of the nurses came in, shut of the infusion and I felt things easing up. That was pretty scary! We learned the infusion had to be slowed down a little over by half. Thus, the day became a long one and I have to go back tomorrow to do the second infusion of the second drug. Please pray I don't have a reaction to this one.
I am feeling really tired and wiped out. But for now the nausea medicine is doing it's work. And I am staying on it like clock work for the next several days!
The four nurses who run the infusion room are really awesome! Michelle, Jan, Kim and Lindsey are really great, kind, empathetic and on top of everything. It helps that I've known one of the nurses, Kim, since I was a teenager! The picture is of Kim and I after we got the infusion under control and I started to feel better after the reaction.
So now I sit (of course!! Sitting is my thing now!) at mom and dad's, listening as we watch The West Wing since NCISLA is not on for some reason. Resting, recouping a bit and praying things stay calm. Praying tomorrow is smoother and shorter! Then I go back in on Friday for a shot to help with my white blood count. Helps it not go down so low from the chemo.
I got a new hat today! Kim came over with a cute, floppy hat with pastels on it! They give away free hats too there:) She thought it would look good on me...and I do like it! It works with the new hair cut. And for a couple weeks I'll sport it with a smile before I'm buzzed.
Now, I think I need to get some water and crackers. Keeping a little food in me is highly recommended:). Talk to you all tomorrow :)
Monday, July 1, 2013
I ended up at Looks Unlimited in Owosso as a walk in. I can't say enough how wonderful they were there! As soon as I told the receptionist what I needed and why, she called in a stylist. That stylist was Crystal...one of the kindest women I have ever met! She listened to what I wanted, but understood I couldn't really say exactly. She got a few ideas and started cutting...and cutting and cutting!! I have included pictures of the hair cut and afterwards. And yes, I was crying during it too. But Crystal just kept working and looking very pleased with herself as she went. This helped me calm down some. But still, as I watched my hair fall on the floor and cape around me, I could see myself \bald in my head and it terrified me. Fear is so strong going through this that sometimes it feels all encompassing. I kept looking at my mom, who was taking pictures as I asked her to so I could blog about this, and she kept smiling at me. Slowly the tears dried up, and with them a little of the fear.
In the end, Crystal asked if she could style it. Apparently I actually have pretty curly hair, but when it is longer it pulls the curls out. So for a couple weeks I have some crazy, curly hair:) At the end, Crystal turned me around and I stared in shock in the mirror! A beautiful haircut that made me feel like I was looking at someone else! Then I realized, I was looking at someone else. Every event in our lives changes us one way or another. Events of such size as the surgeries and cancer and now chemo that I am going through...I'm not the person I was back in April before this all started. And I think that is ok. I don't know exactly who I am right now. But I think the rest of this experience will help me figure out who I am.
And one step along that way was getting a hair cut to help transition me to someone going through chemo. I couldn't have asked for a nicer person than Crystal to help me through that. Between her and the receptionist (who's name I sadly forgot to get) I felt like I was a special person in that time. So I highly recommend if anyone in Owosso reads this, go to Looks Unlimited and ask for Crystal. She is someone who knows her craft...and has a heart of gold! Thank you Crystal for your help and kindness!!