Doc'sCalled

Muddling through... stubborn and determined to do as much normal stuff as possible, but TIRED.

The doctor's office returned my call a bit ago. I wanted to know if the oncologist WAS able to present my case to the Boston colleagues on Friday. The nurse who phoned me said that the doctor DID do that and the question is about whether to give me one or two more cycles of AC. One will be more than enough from my standpoint, thank you. UGH. I'm so tired of it all. The doctor will discuss this further with me on Aug. 4th at the next chemo appointment. If there isn't a great risk difference, I only want the ONE.

The twins have started swim lessons and I went with Kaylee and them for the first one yesterday. We then went to the farmer's market. After, Stephen and I went to see the new Karate Kid movie at the dollar theater. It was GOOD!

Today, Stephen and I took the twins and Kathryn to the little grocery store. I felt quite wiped out, but am so strong willed about trying to have a sense of normalcy. This afternoon, I did little paperwork things at the table and then rested. Now, we're grilling meat to go with potato salad and fresh corn on the cobb. And, I've washed, hung and folded laundry. Imagine it feeling like a LUXURY to be able to do LAUNDRY for yourself? I could even feel the wind blowing through what few little sprigs of hair I have. :-)

Tyler and the baby have come by today and will be back later. They were also here yesterday. I feel guilty for not pitching in and helping him a lot with Aloysius, but honestly, I'm really very, very tired and am using what energy I get to do things for the house and kids. I hope to make it up to him when I'm well. I AM washing his laundry this afternoon. Does that count? :-)

Managing

This is the fourth day out from chemo--- usually a nausea day. I'm doing "okay"... trying to control the nausea with snacks and minimal nausea medication. I'm taking two rather than three nausea drugs this time, with the exception of taking the third one before bed last night. That one helped me sleep as it makes one drowsy.

Yesterday, my sister-in-law came by for a visit and we took a walk. The fresh air was good, and I was surprised to have quite a bit of stamina for walking. :-) I napped in the recliner after for most of the afternoon and evening.

This time around I'm very THANKFUL for pretty good nights of sleep following chemo. This is the first time that that has happened. Usually, I go without adequate rest for the first four days or so. I suspect it's a combination of the prayers of others and reducing the number of nausea drugs.

We were able to get out a bit the day before I got sick from this last round. We took the kids to the library and had a nice time there. I LOVE being able to do as much as possible to keep life normal for the kids while I go through treatment.

Yesterday, Kaylee gave the boys a chance to enjoy Play-doh and painting while the baby napped. I'm so glad. I really had high hopes (before getting sick) of doing a lot of fun things with the twins this summer--- I have so many preschool supplies from when I taught class and wanted to share them with the kids during summer break.

They'll start kindergarten in just FIVE weeks. I'll have about two good healthy weeks with them after the last chemo before they start school. I hope to make the most of it. I also want to put off any surgeries until at least they've been in school for one week.

The oncologist was going to present my case to those Dana Farber colleagues yesterday. I've not heard from her, but I hope and pray the Aug. 4th treatment will be IT. I just want to be DONE! Surgeries and possible radiation, as well as 5-10 years of cancer pill treatments are lined up... but they can't possibly be as bad as chemo.

Right now, I just want a sense of normalcy for my famiy again---I want to cook, clean, take on more of the care of my kids, let Kaylee get back to her own life (looking forward to Bible school in Jan.)... let up on my husband's responsibilities at home. I want to strip wallpaper in the dining room, stain the upstairs woodwork and doors--- live LIFE.

And, I want to be able to help my neice through her long ordeal with her cancer treatments. She's had two of fourteen initial treatments--- will then have surgery---and more treatment. If I can just get well--- I can help her some!

And, my grandbaby... I'm not able to help with him much right now. The months are slipping by...

Lots of things go through your mind when you have to rest a lot! :-/

We're looking forward to a little get-away following this cycle. We plan to go to Portland with the kids and my parents for an overnight. We'll visit my cousin, stay at a hotel with a pool, and MAYBE squeeze in a Chuck E Cheese stop. We'll see. Stephen will leave us in Portland for the night and go to Boston to spend some time with his sister before she heads back to Ghana. I'm glad he can do that.

And, it's good that Stephen was able to take the boys today to visit his friend and his friend's five year old son. Guy time! The kids were excited about that. :-) It's been Stephen's vacation week--- I want him to be able to do things he enjoys before it comes to a close.

Thanks to all who are praying for me. Please continue to pray for my niece who is also sick with breast cancer, as well as for the couple that REALLY needs prayer right now.

Chemo Tomorrow

Well, here we go again--- tomorrow is "treatment day". I'm sad to give up the good health and energy I have right now. The past several days have been pretty good in that I've felt normal and have been able to do routine life things again. I know what's coming, and I dread it. Another week of nausea and exhaustion---leading to frustration---and dependency on others to do my work for me. :-(

We were able to get away on Sunday and Monday to visit my parents and my former sister-in-law. We had a great time! We had a family picnic, got to see my nephew's family, stopped by the beach, and just enjoy the slowe pace of life in my coastal hometown.

The twins had their first ever sleepover at their aunt's house. Kaylee stayed there, too, and enjoyed time with her. They played with their second cousin, their aunt's dog, got to ride miniature horses and feed them, swim, play with toys and watch movies, eat at a restaurant, etc. They had the best time and felt like they were having a vacation. :-)

Kathryn enjoyed exploring at Grandma's house. She calls my parents "grandpa and grandpa". Ha! Stephen and I enjoyed spending time with my parents. Kathryn got to take a walk with Grandma and liked that.

My sister-in-law taught me how to crochet a rag rug and I cannot wait to try it. Today, I bought a hook and some fabric. :-) Hip Hip Hooray!

Today, Stephen and I took our three little ones to the theater to see TOY STORY 3. They liked it and it felt good to me to do something normal wtih them, and to see them happy. We also went to the Farmer's Market with them, to Burger King, and to a store to buy my fabric. It was fun poking around there, as they have a bit of everything at cheap prices.

This evening, Kaylee and I took turns helping Tyler clean his apartment. I was impressed with how he pitched in and did his share. :-) My son can vacuum, sweep and mop! Ha!

Stephen's getting the kids ready for bed, so duty calls. I want to help before "going down for the count" in the days to come.

I hope and pray God can help lessen the side effects this time around. My heart is begging to just be NORMAL again all of the time--- to cook, clean and take care of my family myself! I MISS LIFE.

Oh dear!

I'm in my "good health days" but I've been under a great deal of stress. I can't get into specifics, as it's someone else's business, but it directly impacts me. The couple I mentioned who need prayer--- it's 'big" and keep praying. And, pray for me as I try to help as much as possible on good health days, and ... that the side effects of the next cycle won't be so bad so I can help then, too, if needed.

Tom., we're going to visit "home" (my hometown) and spend the night--- see family and try to have a mini-vacation in a sense. It's going to be hard for me to leave the stressful situation behind, as I'll worry.

I am completely drained... not enough sleep and too much stress.

My son and grandbaby have spent a couple of nights with us. The baby is so sweet. Today, we took him to Build-A-Bear workshop to make an animal. He slept the whole time. :0) Daddy had to do the work. :-) He made a leopard and chose a karate outfit for him. Cute, Cute! Then, Daddy and I ate Chinese food while the baby still slept. He kept his dad awake last night, so ... he was making up for his rest!

Well... I feel completely behind on the things I catch up on after my sick days--- so I'm going to close and try to get my act together. It's the same ol' same ol'... off my feet for about 9 days (for the most part, but there are okay moments), and then I play catch up for several days. I'll be glad when it's over.

Climbing Out of the Chemo Pitt

I'm climbing out of the chemo pitt today. I'm feeling more human, although not great yet. I'll take "more human" over how I've felt lately, though!

I was able to get up and make a healthy breakfast BY MYSELF for my little ones. I look forward to being able to take that role back over full-time again. I MISS those things!

It was a rough night--- two of the kids woke up at odd hours and I had a family problem on my mind. This is a good opportunity to ask praying friends to pray for a specific couple in my family who need prayer. I'm very burdened for them.

Also, pray for my relative today--- she's scheduled to begin chemotherapy and she's VERY scared.

I've had a running "to do" list in my head for DAYS now ... things that have come to mind while resting and trying to feel well. I'm tempted to do more than I am up to and need PATIENCE. :)

There are some little blessings from the past several days that I want to share:

Friends and family helped with the party on Sunday, and I'm thankful for them and their desire to serve/help. They gave of their time because they cared. Time is valuable in our society--- Stephen and I appreciate what they did.

My OB/GYN called the other morning just to say 'hi' and check in. She's very sweet and truly cares about her patients.

An old, dear friend from Wyoming sent a thoughtful card and a copy of Reader's Digest (I'd not read one for years) ...it arrived on a day that I had spent on the couch. It was a treat to read a few articles between napping.

A breast cancer survivor sent a card that arrived yesterday... it's nice to know that someone who's BEEN THERE has her life back to normal now. I hope to achieve that, too!

Back to the physical--- my breast incision opened and began to drain today. I called the surgeon and he suggested the things that I'm already doing. Apparently, it's old fluid that's been trapped in the breast and it's decided to drain. :-) Surprise, surprise--- two months after surgery!

Struggling Through It

I would definitely agree that it's fair to call getting through cancer treatment a BATTLE. I didn't want to use that word, but it seems to fit.

I have spent the ENTIRE day on the couch. I get off to use the bathroom or eat something. Although, I don't feel hunger and thirst today, I try to eat and sip something. There is a metal taste in my mouth. It doesn't help the appetite.

While laying there, I have felt a great deal of frustration. I have had to rely on Kaylee and Stephen to do everything and I want to be the "super mom" that I've always tried to be. I do things for myself. When Kathryn was waking up from her nap, I wanted so badly to go and get her from her crib myself. I hate that my body won't cooperate.

My daughter-in-law's mother and sister have arrived in town from Japan for a few days. I WANT to offer them a proper welcome. They would like to come and visit me tom. afternoon. I want to see them, but I'm struggling with HOW to get this house clean enough to my usual standard to feel GOOD about having them see it.

With cancer, you lose control over so many things. It is HARD.

I see crayon markings on my wood floor. I want to clean it. I dont' want to ask my family to do it.

I want to help my boys make their birthday thank you notes. NOW. But, I can't.

I want to clean out my fridge.

I want to grow HAIR. I am so sick of looking at myself without hair. It's a control thing. I just want my hair back.

I am in the hardest days of the chemo cycle again... it goes on for so long. It took 10 days to feel good the last time. I had FOUR good days and then more toxic treatment. I honestly don't know that I'd go through this if I didn't have kids to take care of.

Yesterday, the twins had their 5th birthday party with friends and family at the bowling alley. I went. People said I looked good, but I felt like a useless blob. I couldn't prepare for this party like I normally would. I couldn't host it well. I couldn't take the pics that I wanted of the kids bowling. I messed up the video of the kids singing "Happy Birthday". I tried to force myself to talk even when I felt weak and tired, and felt like my conversations weren't complete. When I got home, I felt as though I'd been in a busy subway station with noise and clutter and couldn't get my head clear.

BUT, I think the kids had a GREAT time. They seemed so happy and everything went well for THEM. That is what matters the most. I just hope the other kids had fun and that the parents didn't feel unwelcome or not greeted enough.

Little Stephen and I have already started planning their 6th birthday and I HOPE to make it up to them. I've always enjoyed doing my kids' parties and put a lot of effort into them--- even Tyler's and Kaylee's when they were growing up.

After the party, we went to a relative's house for a family BBQ. It was HARD to not feel well. It was HARD to not pitch in on serving and clean-up. I went because my relative is also sick with breast cancer and I wanted her to know how much we love her. I have to say, even though ill, it was SO GOOD to be with family. It was GOOD to watch the children play with cousins. It was GOOD to hug my sick relative. She did such a wonderful job of hosting and making people feel welcome. She's so special to all of us and it kills me to see her go through what I'm going through---and she'll go through it for longer. (More treatment time)

I couldn't sleep last night... much. I was thinking of her. If i wasn't thinking of her, I was dreaming about her. I'm just so sorry!!

Well, on this "not so positive" note, I'll close. Hoping God will give me strength and rest so I can feel at least human enough to have a decent visit with my son's mother-in-law tom. I feel sorry that I can't do more for her. I hope she understands.

Fourth Day After Treatment

Staying encouraged through the prayers of others and God's grace. Nausea as usual--- to be expected. I'm on a nausea drugs regimen for the first four days but will stop taking those RX's tomorrow as I think they just put too much "junk" in the system after those first few days to hurdle. It seems as though just after the nausea days pass the low counts days/fatigue sets in. But, it's par for the course. I'm thankful to not get sick to the point of vomitting like some folks do.

I went to the surgeon's this morning for a check-up. He thoroughly checked for lumps, etc. and gave me a good report.

Yesterday, I wanted the twins to have something fun to do. I rested til 1 PM and then we took them to the Build A Bear Workshop to make animals with some birthday money. They had so much fun, and it did my heart good to maintain a sense of normalcy for them.

I came home and rested for a few more hours. Then, invited all five kids out for ice cream together. A friend had given us a gift certificate to an ice cream shop. What a blessing! We were able to make a little family memory together. Since Tyler lived away for most of the past few years the kids haven't gotten many times together like that. I'm thankful!

Also, just before that friend popped in with a sweet card and the gift, another friend had brought by a delicious meal. YUM! It's such a blessing to receive this type of encouragement from people who not only care, but they love the Lord and want to serve Him by helping others.

The more that time goes on these days the more I realize that the body of Christ is all in the "struggle of life" (human experiences such as loss, sickness, etc.) together and we all NEED each other. Everyone's facing challenges of some sort at one point in time or another.

One verse that has really helped me through the past few days is ... I forget the reference and the exact words...it's the one about not worrying about the things of tomorrow because today has enough worries of it's own. Whenever I start to feel overwhelmed or worried--- I claim that verse. If God's giving us that advice, it must be good! :-)

My grandbaby is being released from the hospital today. It's been 1 1/2 weeks. Kaylee and I washed three weeks worth of laundry for his family yesterday. They're expecting grandma and auntie to visit from Japan this weekend, and it's been hard for Kanaho to prepare as she's been at the hospital with the baby. They're coming by here today to visit and bathe Aloysius.

My goal for today and tomorrow is to rest as much as possible in order to be able to enjoy the boys' birthday party on Sunday. Afterward, we're invited to a family BBQ. I hope to make both events and for everyone to have a great time together!

Another thing that helps me tremendously with rebounding from treatment... an added note here... is to eat well balanced snacks and meals EVEN THOUGH I don't feel hungry for the first week. I feel much better once I eat something, just the same. It's a trick to balance the electrolites and nutrients following a chemo blow to the system, but good nutrition definitely makes a difference for me. I wanted to note this in case it helps someone else.

Thanks for continued prayers for me and for my 'close person' who's also facing breast cancer and chemo on Monday.

THIRD CHEMO

It's done. The third cycle took place today. I did consent to having Adriamycin and Cytoxan. I had very mixed feelings about it --given that Adriamycin has a small risk associated with it for causing heart pump function damage and leukemia. But, there isn't any other "standard of treatment" that would be equivalent to the other drug combination that led to a strong reaction.
The doctor wants to avoid giving me that other drug (Taxotere) or anything from that family of drugs.

There's a lot to break down in this blog. Typically, AC (Adriamycin and Cytoxan) are given with Taxol (several weeks of this drug AFTER finishing with AC cycles). Since I reacted to Taxotere, I can't have the Taxol treatments. Thus, I'm not getting the full "standard of care" for this treatment regimen.

My doctor believes that just three cycles of AC will do it for me, but she's going to present my case to a team of doctors from Dana Farber in Boston on July 23rd when she'll be in meetings with them. It will be GREAT to get their input about my treatment plan. I just hope they all reach a general consensus and don't offer too many varying opinions.

My doctor said that my case is a complicated one. I'm too tired to get into the variables, but it's stuff I've shared before. i.e. My Oncotype DX (genetic testing done on my tumor at a lab out of state) recurrance score came back as 15 out of a possible 100--- which for nodes NEGATIVE women would suggest that chemo would not be beneficial. Yet, because not enough info. is "in" about the Oncotype DX test for nodes positive women (such as me), we're doing chemo anyway. Then, with the reaction to Taxotere, both options for "standard of care' treatment have gone "out the window" for me. It's a strange "place" to be for a patient. So, I'm grateful that the Dana Farber team can come into the picture... my husband and I always say "Two heads are better than one." And, my doctor welcomes second opinions. She doesn't have an ego issue, even though she's known as the best oncologist in our area. :-)

Another issue that's come up is the p0ssibility of a family inherited gene for cancer. Without compromising the privacy of another individual, I can't get into it in my blog. Initially, the doctor didn't think it'd be likely that I'd carry this gene, but now that someone else in my family has been diagnosed at a young age, there's a chance I have the gene. We'll be looking into this. I pray I don't have it, as it causes a high risk for developing cancers.

On a positive note--- if I'm gonig to only have TWO more cycles of chemo, and all goes well with blood counts, and we can stay on schedule for treatment--- I'll be DONE on August 4th! :-)

It was GOOD to meet with my doctor after what happened at the last treatment. I needed to hear her thoughts on everything and ask questions.

I don't know what to expect from this new drug combo. The nurse said it may cause MORE nausea than the other regimen. I asked if it may cause my eyebrows and eyelashes to come out and she said it could. :-( I hope not!

With the other combination I didn't get sick and "wiped out" til day 3--- that would be THURSDAY. My sickest days would be Thursday and Friday, with a great deal of fatigue on Saturday-Tuesday. Please, if anyone's reading this, pray that I'll feel well enough to attend my twins' birthday party at the bowling alley on Sunday. Thank you---tons!

Some GREAT days before chemo tomorrow

I haven't been posting for a few days because I've been busy njoying feeling GREAT and spending time with my family. :0) What a blessing it's been t feel WELL.

We had a wonderful 4th of July as a family. We missed Tyler, Kanaho and Aloysius, as Tyler had to work and Kanaho needed to be at the hospital with the baby. Thankfully, they were able to enjoy the fireworks with a great view from the hospital room, though. :-)

Today, we took the boys to the lake/beach for a few hours of fun on their 5th birthday. They had a GREAT time. We all did. :-) The baby loved the water and the swings. The twins did a bit of everything... swimming, digging in the sand, playground, picnic, more swimming...:-) And, I LOVED being in the lake and swimming with the kids. THAT was the ONE thing I was afraid that chemo would take away from me this summer.

God really blessed us today. There was a nice, consistent breeze at the lake and plenty of big shade trees to sit under. (With chemo, one becomes sensitive to the sun and has to be careful.) I'm so thankful and happy for how things were today!

After the beach, we rushed home to meet Tyler, Kanaho and my parents are house for a quick birthday party before Ty had to go to work. We had cupcakes and Tyler and Kanaho brought a yummy ice cream cake. :-) The twins opened presents from all of us and have had fun with their new toys.

Tomorrow, while Mommy and Daddy are at chemotherapy, big brother Tyler's going to come and play soccer and squirt guns with the twins. Kaylee will be babysitting for the day.

Please pray for my appointment tomorrow. We'll be discussing with the oncologist what happened last time (reaction to Taxotere) and what she'll recommend for a new chemo regimen. If it's all agreed upon, I'm scheduled for a 2:30 PM treatment tomorrow.

Also, please continue to pray for my grandbaby. He's still in the hospital and will be until at least Friday or Saturday. His grammie and aunt from Japan are due to arrive on Saturday. It'd be so good if he could be released by then so he and his mom can enjoy their time with family.

And, pray for the person close to me who has also been diagnosed with breast cancer. She has a really difficult road ahead as she has an aggressive tumor and needs a strong treatment regimen which will start very soon.

We appreciate the prayers of others so much!

Better!

Better today--- hip hip hooray! I can tell that people are PRAYING! :)

It was SO GOOD to do normal things for my kids MYSELF. I've bathed all of them, took them to Walmart with Kaylee, gave them supper and cleaned it up--- I think they're glad to have that sense of normalcy with Mommy again. :) I'm so thankful!

I went for blood work to find out why I have been more weak and was shaking at the store yesterday. My potassium and calcium are low, and now they're checking my thyroid and ordering an anemia study. If I want a check-up tomorrow, it can be done, but I hope to feel okay enough to wait til Tuesday's appt. with my doctor.

Aloysius (grandbaby) has to stay in the hospital for several more days. :-(

We're thankful to our friend Patty for making her delicious meatloaf for us tonight, and to her husband for delivering it. We were able to eat a healthy meal and can now just relax with the kids.