I feel like I'm breaking

My legs and knees ache like crazy. I wish I could just take some heavy meds and go to bed. But the car needs to be picked up from the repair place, dinner needs to be made, residents are moving out, the girls need to be watched, and the phones need to be answered. The aches are in my hands, knees, legs, hips, everywhere. It hurts and it comes and goes. I just feel like my body is breaking up!

I'm in a foul mood and I can't do a thing about it. I really feel like I'm all along in some ways. I feel ignored and shut out and passed over and I'm mad as hell. I hate feeling like I don't know what's going on. It's almost as bad as the physical pain but no one knows except Mom because no one has bothered to ask me how I'm feeling. I'm just hurting all over today and I really don't know how to make it better. I'd ask for a blessing, but I don't know who to ask.

I made a mistake

I made a mistake. Never write in a blog at 5am. I said some things in my last entry that I regret. I deleted the paragraph and I'm sorry I said what I did. It was early, I was hurting, and feeling very sorry for myself and didn't really know what I was saying. Kristen has tried to IM me several times, Erin has sent me some clothes and at least one cute package for the girls. I had forgotten this when I wrote this morning. I hope you guys aren't too mad at me. I'm really sorry.

6th Chemo treatment

Well, I'm glad I called earlier this week and asked if I could start my chemo sooner. They had me scheduled to for the doctor visit at noon and then chemo starting after that. I know my treatments are long, but I didn't want to get out so late. So they let me come in at 11am and start chemo and then go see the doctor an hour into it. Good thing too since I was the last patient there at 5:30pm. They got my prechemo drugs in me and then had to wait for results from a liver test and discuss it with the doctor before they could start me on the Taxol. My levels were elevated enough that I might not have been allowed to continue. They don't like the levels to go over 120 and mine were 181. So that took extra time and then going to see the doctor took extra time because he was running late.

No clue about when I actually started the Taxol and Gemzar. They gave me a dose of Tagamet and Benedryl with some IV Ativan thrown in for good measure. I didn't have any Emend this week and I was more that slightly worried about getting nauseated so they gave me the Ativan. That took a little extra time but it was worth it if I don't get sick.

It was funny when I walked in. My chemo buddies Donna and Tonya were sitting across from each other and Donna immediately pointed next to Tonya saying that they saved me a spot. Awwwww, that made me feel good! So we all chatted and had fun. I made cookies and brought them yesterday with the recipe included. There are a lot of older people there and if they have health problems that deal with diet, I wanted the recipe there so they could see what's in the cookies. Plus, selfishly, I loved the cookies and wanted to share so someone else could make them. They were gone in a hour!!!! Yeah. I heard both nurses and patients talking about them. Made me feel great. Donna had her last treatment today and it was also her anniversary. So she sent her dh out and he brought back a gorgeous plant for the counter and a huge chocolate cake for everyone. I'm going to miss her! But she rang her bell after she was done with treatment and everyone clapped for her. I'm proud of her and hopes she does well with what come next.

I go back today for my two shots to help my white and red blood cell counts. Can't wait for that. The girls are at Grandma's house today and I'm going to be here trying to recoup. I'm just so tired but can't really sleep which is why I'm up at 5am this morning. Work stuff is happening, so I have to be alert for that today while I'm here. So no closing the bedroom door and taking a nap. But I refuse to go inspect the apartments today with the insurance company. I told the office that and they know. I just had chemo and I'm not going to every apartment and get a chance at getting sick. They don't pay me enough. I'm also going to try and get to a stamping party tonight. I didn't go last month but I want to try tonight. It's the only "fun"stuff I get to do and the only chance to be with friends and be "normal". I hope that I'm feeling up to it.

Relay for Life event

I was really not sure about going. I'm don't consider myself a cancer survivor, I barely like to even remember I had cancer in the first place. But I remind myself that I have had to do "battle" with it and so far, I'm winning.

That out of the way, I went to a Relay for Life in Vancouver last Saturday. This is the Saturday belonging in the hottest weekend of the year so far and felt like you were in hell. Vancouver is not supposed to get that freaking hot!!!

Anyways, I registered and was able to get a free purple survivor tshirt. They were having a survivor photo shoot at 10am. Thanks to car problems, we got there about 5 minutes after the picture was taken. I'm so bummed about it. Anyways, we get in the track with tons of survivors. There are some opening remarks and a celebrity spokesperson says a few words. Then, the master of ceremonies says for the survivors to take the first lap. Everyone else including sponsers and friends and family get on the sideslines and cheer us on. They are clapping and cheering us as we walk together around the track. I couldn't do it alone and Jason held my hand and walked with me. My heart was literally in my throat and tears were streaming down my face. It was such a very special moment. I didn't feel like a hero at all. But I'm so far surviving this wretched disease so I guess I'm do okay.

After that, all the sponsers and groups walked so we could see how participated. My cancer center had a team and my nurse Janelle was there with her little girl. It was nice to see all the nurses there. It's great and they knew me by name and called out to me when we went by their booth. The booths were on the outside perimeter of the track. So after all the intros were over, dh and I walked around to see all the groups. Each group had a booth and there were raffles and prizes everywhere. At the hospital booth, they had a quilt that caught my eye. All the fabrics that were used in my quilt that my friend made me, were in the quilt up for raffle. All the material was created and sold to raise money for breast cancer research. So I was impressed to see that someone had made this quilt for the raffle. They had it appraised for $600. Mine was just as good or better than the one for auction, so I knew I had a valuable quilt if I ever sold it, which I never will. The thought and actions behind the making of it, make me love it more than money is worth. I still signed up for that raffle. It was worth it.

Next, we went to the Survivor's tent. They had a special area for survivors where we could get free drinks, have a place to sit and rest, and have lunch. We were treated by Outback Steakhouse to a free lunch. Each plate had steak, chicken, rice pilaf, black bread, and caesar salad. Then we got a piece of cake from this bakery in town. By then, the survivor picturew as developed and all the survivors were given a copy of the picture set on a nice background. After that was a drawing with like 20 prizes. None of which I won. Oh well. We walked all over the place to see everything. I wanted to stay for hours, but it was too dang hot and humid and we had to get the girls.

We came back that night where I was hoping to see the luminaria bags lit. White lunch bags were decorated and lined up on the inside edge of the track. Unfortunately, it was going to be lit around 11pm and we wouldn't be able to see it. I would have given anything to stay but the girls were stretching their limits on how well they could behave. They were great and we didn't want to push our luck.

So all in all, it was a good experience. I recognized one lady from chemo and chatted with her for a few minutes. Otherwise, I didn't see anyone else I knew. I was just amazed at how many cancer survivors there were. Like I said, I was bawling walking that first lap. All I could think of were all these purple shirts and each one represented someone who beat cancer. It was sad how many people it had touched.

Struggling along with the new chemo

It's been a very busy week for me. In the last 30 hours, I've had 4 nosebleeds, various other bleeding, been sick to my stomach trying to make other side effects go away, and then I had to run to the hospital to have my blood drawn at 7pm last night. I called the cancer doctor and let them know I was having some side effects that I wasn't expecting and was it normal. Since I'm on this trial, they are very attentive and very careful about how I'm doing. The oncall oncologist decided that I needed to get my blood drawn immediately instead of waiting till today to go into the cancer center. So I go to the nearest hospital and had my labs done. Turns out my platelet count and blood cell counts are fine and I'm slightly anemic.

Then I get a call today from the cancer doctor who wants me to come in on Friday to have my labs done AGAIN. Just to check them before the weekend. Thank goodness I'm covered on this stuff by insurance! Next week is a chemo week, so I have to go in on Tuesday to have them done too. So 4 times in two weeks to have my blood drawn. Great.

The other side effects I was told about have now started to develop. Part of it is my fault though. But anyways, the painful achiness and joints hurting have started. It was so bad tonight that I wanted to cry. I took two percocet and I'm floating now. But stupid me, after I got home from the hospital last night, I stayed up late making freezer jam. I had the berries and had to make the jam while the berries were fresh. But standing in the kitchen barefoot while your joints are hurting wasn't the best decision. I hurt from the hips down all night.

I would love to have one week where something wasn't hurting or aching or my stomach sick or having nosebleeds. Just one week! I feel whiney, but good grief!!!! Anything bad that can happen, any bad side effect that can happen, has. I'm tired and emotional and sick to death of feeling bad. It feels like years since I have felt 100%. I went and saw my regular physician today and she said to go have a massage, manicure, pedicure, or something that would make me relaxed and cheer me up. I wish I could so much. Finances are so tight though. Too bad she didn't give me a prescription for it and I could charge it to my insurance. Somehow I think that claim would be denied.

I got a cool card in the mail. A friend of mine who is moving out of the country sent me a card just letting me know she was thinking of me. We haven't had as close contact as we had because of family issues. Just out of the blue on such a hard week, she just wanted to tell me hi. That girl has perfect timing. I'm so grateful to her. That card is going on the cabinet in my kitchen so I can remember to keep my chin up. I miss her but know she is doing great things now and moving will be wonderful for her.

I'm so ready for a massage

I learned some lessons yesterday. Just because you feel good two days after chemo, doesn't mean that you are in the clear and can do what you want. Also, if you ever get a flat tire on Sunday and need to call your dh for help, I guarreentee your HT will be there at your home when you call your dh.

I was feeling pretty good and went and picked up my mom at the airport. Everything was fine. I was feeling a bit sick before so I took something and was fine. I started to feel a sore throat come on and some tiredness but that's it. Since we were both hungry and we haven't seen each other since before my mom left on vacation, we broke the Sabbath and went to Olive Garden for lunch. It was so good! I love my capalini pomodoro which I just spelled horribly wrong. Anyways, on the way out, we notice that Mom's car had a nearly flat tire. So we call Jason to come save us and our home teacher is visiting us at the same time. Great. So The home teacher comes over and helps us change the tire in the Olive Garden parking lot. I know I'm going to hell now.

But anyways, we go back home and visit for a little while. I'm sitting on a chair and doing my best to stay upright and not crumble on the ground. As soon as they leave, I drop on the couch and then practically crawl to bed and don't move for a couple of hours. I felt like I had run a marathon or something. The feeling of being in one position for so long and then you stand up and stretch and realize how much you ache all over. That's what it felt like last night. I would have paid dearly to have a full body massage. It was that kind of ache.

I just hope that I can start taking better care of my body. My diet sucks. Right now I'm eating what sounds good regardless of what it is. Because so many times nothing sounds good that eating is just boring and not fun anymore. But I'm starting to ramble because I'm tired. I meet with my regular doctor on Wednesday to get an update and just make sure I'm doing okay.

I'm so lonely in some ways. I look forward to chemo because that's the only place where I can talk to anyone and they know exactly how I feel. I don't have to try and explain or anything. They just KNOW. I can joke about being bald or the side effects and they GET it. I have great online friends but, they aren't here with me. And I have some friends here in the area, but I can't ever meet with them. Different schedules or I'm way too shy or embarrassed to have anyone over and I don't know what to say. So it's my own fault.

I have a bunch of people I dearly love that I'd love to hook up with in Utah. It seems like they get together all the time and I'm so dang jealous. I try not to hear about their adventures because I just end up wanting to cry even though I'm happy for them. Just really sad for me.

So what am I waiting for?

I'm not sure how this treatment is supposed to go. I keep waiting for some side effects, but the ones that have come aren't what I'm used to.

Instead, it seems this treatment is more emotionally draining than any other. I am so messed up I don't know my way out. It's pathetic to be able to go to a blog and write out your feelings than express them to a loved one. I can't seem to explain myself well with my mouth, so I have to do it this way. If you see yourself in this, great. If not, even better.

Please don't ignore me. Please love me. Please show me that I'm the most important person in your life. You may think by physically removing things from me that you are taking away my stress. I just worry more when I don't know what's going on with my job or my girls. I don't like my decision making abilities taken away from me. I like to feel that I'm still in charge of my life no matter what's going on. I don't know how to make things better but I'm afraid to really tell you how I feel because I'm not ever sure of the response I'm going to get from you. I don't know if you want to be more involved in my cancer care or if you are just going through the motions to make me happy or to make you feel like you are a part of what's going on. If you honestly don't want to go somewhere, tell me. If you really care and want to do something, tell me that too. I don't know what to share with you.
I feel extremely vulnerable with you and very shy. I know how I look and I don't know how I feel. I forget a lot of stuff now and I don't mean it. So you may tell me something, but I don't honestly remember you telling me. You have to repeat and make sure I know what you're saying. I need to know that you love me. I need that more than anything. Because why should I fight if I don't feel any love at all?

This is how I feel and I can't help it. Just don't hide from me anymore. Don't run to this person or that or talk it over with someone else. Don't hide from talking to me about stuff. It's like you're already getting rid of me. I need a blessing, but I don't feel I can ask you for it. I know you would do it, but would you get WHY I need it? All of it?

5th chemo treatment- longest treatment of my life

So the day finally came. It's strange how I look forward to this day and dread it at the same time. I love seeing my "chemo buddies" because they alone know exactly what I'm going through. No matter what you tell your friends and family, it's not the same. Plus it feels like I'm doing something active to further my treatment instead of just sitting on my rear end. Also, I don't have to impress anyone there. I can go without makeup, wear a simple hat or not one at all. And no one cares. More than half have already lost their hair and it's just understood there. No judging at all. Thurdays are busy and there is lots of talking and my friends and I sit together and chatter most of the time we are there.

But since Mom had to run off the that great family get together in Idaho, Jason took the day off work and came with me. He's only met my doctor once and has never seen me get chemo. He just knows how I am after the treatments. It was kind of nice. He hates needles, so when they got ready to stick me, I made him go to the car and get my magazine and also to find me a slurpee at the 7-11 down the road. I think he was happy to go. lol

I ended up sitting next to Tonya and kitty-corner to Donna. Sue showed up much later and wasn't near us. But I got my two favorite ladies and that was nice. Tonya's dh Wayne had a Big dog shirt on and they were talking about fishing and you could see Jason's eyes light up and that helped him calm down a bit. That and when Tonya and I were talking about how they kill halibut made him laugh. I never knew they smack em on the head with a baseball bat till I saw dh's video in Alaska. But the boys had that in common and I was glad. Donna had her husband Sam were there and Jason got to shake hands all around. I was so happy that all the boys were there so Jason could see the support that they brought to their wives.

That was one very long treatment. We got there for a 10:30am treatment. After waiting for the doctor and then the chemo drugs to start, I got started around 11:30ish or so. I had mixture of tagamet and benedryl to help with heartburn and possible reactions and allergys to the taxol. That took a while. Then the drugs had stopped and it took the nurses a while to figure it out. Then My taxol started. That took at least 3 hours to get in. Then after that I had my dose of gemzar. So after all was said and done, I didn't get my line out til after 5pm. They were being extra cautious since it was my first taxol treatment and there is a good chance of allergic reactions so they gave it to me really slow, same as with the gemzar.

I got bored quickly so I was bugging Jason a lot. I know that John was home and I'm sure we called him a lot. But, we were able to bring his laptop to the treatment center and watch some Friends dvds on it so that helped for a while. Then I got a phone call and closed the lid. We couldn't get dvd player to work again. So dh played solitare and I tried to read my magazines again and do word searches.

I didn't feel sick or anything. I had taken 20 miligrams of dextamethasone the night before and in the morning and took my Emend while at the chemo place. So there was no chance of being sick ot my stomach. I was a bit slowed down after the benedryl but nothing to knock me out with. I made sure I had a lot to drink and had plenty of Gatorade when we got home. Even had leftover macaroni salad that my mil left me. I thought for sure I would be exhausted and ready for bed the minute I got home. But even though I was super tired, it was managable. I'm up this morning and though I'm tired, I don't have any pain anywhere at all. I was anxious and worried about that too. But it's still early, so I'm taking it easy today. Grandma has the girls today and I'm very happy about that.

I'm joining the Relay for Life event going on in Vancouver next week. There was a brochure for it at the treatment center yesterday. It was an invitation to all cancer surviviors to join in the "Celebration for Life". It's July 22nd and even if I'm not staying for the whole 24 hour event, I want to go for a little while. It's hard to see me as a survivor of this disease, because I'm not sure I like that word. I'm living with cancer and doing my best to conquer it. I'm kind of excited but scared at the same time.

I'm going to make myself a present. Even if it take me a year to save for it, I'm going to do it. My mil's friend is going skydiving tomorrow in Mollala and Jason is going with the inlaws and the girls to see it and videotape it. My gift for me is when all my surgeries are done and my health allows it, I'm going to go do a tandem skydiving jump and have it videotapped. It cost extra, but I think it would be incredible to have that on tape so if anything ever happens, my girls can see it and it gives me something to look forward to even if I'm terrified to do it. We'll see.

Time for another treatment

I'm getting ready for my next chemo tomorrow. I have absolutely no energy though. I'm thinking of everything I want done, but my butt still sits on the couch while my minds running a million miles a minute. Trying to think of what I want for dinner for tomorrow, what laundry needs to be done, do I need to go grocery shopping, what do I bring to chemo, etc. It's the first time that Jason is going with me as opposed to my mom. It's also the first of my taxol treatments since I'm done with the AC combo. It's supposed to take 3 hours alone for the taxol and I've heard to add about 2 hours onto that to include the doctor visit and the prechemo drugs. Should be a barrel of laughs. I was told I don't have to take my Emend but one nurse said to bring it anyways. I got a prescription filled for a steroid I'm supposed to take and I'm kind of nervous about it. It says to take 5 pills the night before and the morning of chemo. FIVE PILLS??? I've been waiting for hours for the nurse to call me back so I can get the dosage right.

I've been fighting a headache for a few days now. I'm not sure what it's from. I don't drink a lot of water so maybe that's it. I don't like the taste of the stuff straight from the faucet. I like bottled water better. Also, the girls have been testing me all week. Lindsey learned how to climb out of her crib and Chloe has said some pretty mean things to me. She also blatantly ignores me and when I ask her to get in her carseat after visiting Grandma's house, she goes limp. So I have to pick her up and drag her to the car. Not any fun and very embarrassing in front of my inlaws. I've been hit by them, Chloe has "fired" me, screamed at, ignored, kicked, and Lindsey grabs at my clothes. I have been pushed beyond my limits with them and I'm not happy with my behavior.

So I'm nervous about tomorrow. First time with taxol, first time without my mom, first time with Jason there. I don't know how he's going to react to everything. He doesn't like needles so I know he won't be watching when they stick me. When I had my labs done yesterday, the lidocaine really hurt. I was surprised because normally it's just isn't painful. So I'm not sure how things are going to go. I hope for once that things will go smoothly and I won't feel sick to my stomach.

Bits and pieces, more whining, etc.

Okay it's after midnight and I'm still up. I haven't had a soda since lunchtime so this stinking insomnia is to blame.

How do you know when you're asking for or expecting too much help? I am getting people from all sides offering to help but I feel like if I accept their help, I'm being selfish. I feel like I should be able to do things myself. But I can't and Jason is doing too much and our apartment is a pigsty. But then, I'd love for someone to scrub my bathroom but I'm also too embarrassed to have someone come see it and see that I'm not able to keep up my own apartment. I'm so mixed up! I'd feel like someone is judging me for not keeping a clean home.

I'm not a very good housekeeper even in the best of health. I now feel even worse that my home is not looking so good. I want to scrub my kitchen floor and finish all the laundry and clean my room and all these things, but I lack the drive and the energy to do it. I put all this pressure on myself to do things but I can't physically do them and then it makes me upset and cranky and then no one's happy because I'm being a grump. I don't understand myself at all.

My mom wanted to take some pictures of us to finish her roll of film in her camera on the Fourth of July. She got the film developed and came over today. I let her take pictures of me looking how I am with a headscarf on and even one picture of me without it and Chloe rubbing my bald head. When I saw them, I was honestly shocked. My first thought is that the person in the picture must be seriously ill. Then it hit me that it was ME. I'm so used to how I look that I didn't realize that my eyebrows are halfway gone, I didn't have make up on and was really pale and my zits were bad. I had to ask my mom to make sure she didn't bring the picture of me bald to the family get together because I was so humiliated on how I looked. It really was shocking to see those pictures and I don't mean that in a dramatic sort of way. I honestly didn't think I looked sick but I guess I do. Not that my self esteem needed any more hits to it, but today was not so great.

It gets even better. My next chemo day is July 13th. Chloe's birthday is July 14th. My baby is going to be 5 years old and I will be recovering from my chemo treatment and not be able to spend the day with her. How it usually goes is that I come home from chemo and sleep or rest the rest of the day. The next day, someone comes and takes the girls again so I have a day to sleep and get over the sick feelings that come with chemo. Which means I won't see my baby on most of her birthday at all. I cry every time I think of it. She's going to be with a great family so that makes me feel good in a way. But even though we are planning to celebrate her birthday the next week so that I will be feeling better, it's still her BIRTHDAY and I can't do anything with her on that day. Even if we don't tell her that that day is her birthday, I will know and it's killing me. I don't know what to do!!!!!! I don't know how to make things better or make me not feel like a loser for not being able to do anything on her actual day.

My breast cancer quilt

My husband has a friend named Leanne that makes quilts with her mom. They own a business and the mom makes the quilt tops and Leanne uses a fancy long arm machine to put special designs on top of the quilts. Anyways, they heard I got breast cancer. They found some brand new fabric that was made for breast cancer research and the proceeds would go to support breast cancer. So they made me a quilt with these new fabrics and dh was able to pick up the quilt last week. I'm totally in awe of it and could stare at it for hours. I'm so grateful for Leanne and her mom for making this for me and all the beautiful work that went into it. It's beautiful!!!

Where did the weekend go?

Well, I'm happy to say that I rarely got nauseated this weekend since my chemo treatment. I drank a lot of stuff and didn't feel sick till Sunday night. But boy was I wiped out. I think I slept or dozed more than I have in a long time. Thursday, I was up for a couple of hours after chemo, but then I was out for the rest of the day. I woke up now and then, but not too much. Friday I made myself stay awake till after Mom brought me home from my shots in Vancouver. I know have to have another shot since I'm becoming more anemic. But I went to bed once I got home and I don't remember much of that day either. Saturday morning, dh went to go help someone paint their home in the ward. I had the kids to watch and once he came home, I think I went to lay down and missed most of that day too.

On Sunday, a friend called to say she was coming through town on her way back to Gig Harbor. I had a great time talking with her. I wish she could have stayed longer. In the morning before she came, I helped get the girls ready for church. I woke up with them, made everyone a huge breakfast, and as the girls got out of the bath, I dried them off and combed their hair. After that, I lost all my energy and had to lay down. While the girls were busy with Jason, I had to crawl to bed and lay down because I was so exhausted. I felt like a wimp!

That afternoon after we wook up from naps, we took the girls to my mil's house so we could go play cards with John & Katie. We stopped by to show Mom the quilt that dh's friend made for me that is out of this world. This quilt needs a post all it's own it's so incredible. I almost didn't want to show Mom because she had just made me a tied quilt and I didn't want her to think I liked it better than hers. She made mine with love and I love it to pieces because of the love and feelings she put in to it. Then we played cards with J&K and had a great time. I love them. John is maturing so much and Katie is so wonderful.

But just that bit of activity wiped me out again. I don't know how I'm going to handle the girls on Monday when doing so little makes me so tired and wiped out. While at Mom's I just started to cry I was so tired. I haven't done anything this weekend, but each thing I've done feels like it took forever to do and used up superhuman strength. I keep feeling like Jason's mad at me and I dont know what's wrong. I don't have the energy to figure it out because all I want to do is cry. I'm so messed up. I can't wait till I'm back to normal and feel like a human being. I just wish he would tell me what's wrong so I can fix it or try to change things. I love him a lot but sometimes I haven't got a clue about what he's thinking. I feel left out in the cold. I'm sure he doesn't mean it that way, but my way of thinking these days is so weird. It takes twice as long to think of something and twice as long to process anything in my mind.

By the way, I hope my good friend Maryann is feeling better and that she is okay after the car crash. I was really worried when I heard Em post about that.