Update

Well, a lot seems to be going on and at the same time, we're in the redundancy of "the cycle", trying to take care of myself so that I can get better and be ready to go back for more.

I've been struggling with perspective over the last week. It's been harder to focus on the positive and easier to be crabby and disillusioned. I know that there will be times of more and less discouragement, but I'm also wondering if cancer/chemo has stages kind of like the grieving process has stages. Does anybody have any knowledge about this? Maybe understanding how this tends to work and what might be coming would help me work with it better.

I'm reading "When I Lay My Isaac Down", and it's really challenging me. I've realized that one of the things I've needed to surrender was my dreams/expectations regarding Ethan's pregnancy and infancy. I think that God has just about brought me through that process, and it has been challenging with lots of tears. However, there definitely is more that I need to surrender to Him. Of course, giving up control (that truly is just an illusion anyway) has been ongoing...control of aspects of the kids' daily lives, my schedule, household decisions, how I walk, my health, etc. I hate to think of myself as a control freak, but when everything seems to be out of control, I'm realizing that a sense of control is more of a source of security than I realized. So, I see some hard changes on the horizon, and it won't be me that makes them. Only God can accomplish this, and that brings me to another area where I'm being stretched...trusting God. How absolutely crazy in that He is MOST trustworthy. However, I am human and this is where it's at. I want to trust Him with my days, not worrying about whether I'll have to do more chemo down the road or how I'm going to even make it through this one, but I am not. The book that I'm reading talked about Carol Kent having to work at trusting God with her son 1 minute at a time and then it turned to 5 minutes at a time. I think that's how it's going to be for me, asking Him to help me trust Him 1 minute at a time. This is a process, and it's not going to be in my timing.

On a lighter note, my hair has been short for over a week and buzzed (only 3 mm long) for a few days. Lyndsey touched it right after Bob buzzed it and told me that "it's sparkley", which I thought was very cute. Anderson seems to be doing fine with the change, handling it in his typical reserved way. The amazing thing to me is that my brother, Dan, was right about the no hair thing. He had told me weeks ago that the kids probably wouldn't even bat an eyelash at the change because people tend to see others as they've always known them (sort of by memory of what they have always looked like). Well, I wore my wig for the first time Sat. night, and my kids and Bob didn't even notice! Lyndsey walked into the bathroom, talked to me, and left without a comment about the hair. It wasn't until hours later that she started talking with me about my wig and asking questions like, "Where are yours sparkleys?" 8) Bob had a few minor interactions with me without any comment and then eventually commented in surprise, "Oh, you have the wig on! I didn't even notice!" Anderson wouldn't have commented right away anyway, so I'm not sure when he noticed, and of course, Ethan doesn't care about his Mumma's hair. So, Dan was right. The obstacles with the hair at this point are 1. getting the wig to fit right since it couldn't be done before and 2. learning how to sleep. I've found that my body can't seem to regulate its temperature now that I don't have insulation. I keep waking up, hot then cold. Last night was a bit better perhaps because I didn't sleep with a pillow and left the fan on. It's a work in progress.

Hair yesterday, Gone today

So, it's been done. I no longer have long hair. It was coming out in massive amounts this morning, so I knew it was time. It was kind of good because I was actually getting mad about all these long hairs that I kept trying to pick off my arms and clothes. So in that sense, I was ready for it to go.
Do I like my short hair? No. But I'm sure I'll be less thrilled with no hair at all, so I'm not going to complain much. The kids don't really seem phased by it, so that is good. Bob said he liked it, to which I grouchily replied, "Don't like it too much." He's always had an eye for short haircuts as evidenced by his pre-Sarah days. 8)

Wig Party

Yep. We had a good time at the wig party, although I am EXHAUSTED. The day was a very full one, very emotionally charged even though my hair is still attached. Thank you to all of you who are supporting me through this tough challenge. I am so blessed.

Wigging me out

Sarah did not get her hair cut today. The stylist that created Sarah's wig (the one who was suppose to cut her hair), said that her hair was still holding strong. He should be able to pull at least ten hairs from the top of her head, but was only able to pluck two and Sarah felt each one. So, when Sarah is able to pull at least ten hairs then she will get it all cut off. The stylist thinks it is going to be a few more days.
She did bring home the wig today though. And let me tell you it is freaky looking. It looks just like Sarah (as it should). Sarah had put it on our hutch (on the bust) while we ate dinner and it kept catching my eye and freaking me out. She said we are going to keep it in our bedroom ... I don't think so... I am not going to wake up in the middle of the night to be freaked out by this head of hair looking at me. Call me weird but it just wigs me out.

Tough Days

The last few days have been really tough. I'm still feeling pretty yucky, which doesn't help, but I'm also experiencing a lot of fears and doubts. The fears are that the chemo isn't what my body needs (based on proposed theories about cancer being a fungus and "fed" by what we eat - this might sound crazy, but the possibility that it could be true makes me at least have to look at it) and that I will have suffered through it and it not work. I am struggling with hearing AGAIN "you have cancer (or another tumor)". The doubts about whether I should even do the chemo have been drowning me in tears and constant battle to take my thoughts captive. (Keep in mind that mine is a unique cancer and therefore one that the doctors don't know a lot about. They are treating it like bone cancer, which they do know about, and say my prognosis is good if I do the chemo. Do I trust their judgment? - Notice that I did not say "trust them" as that would be relying on them knowing all, which they can't as they are human.)

OK. So that's the ugliness of my thoughts and feelings, what I'm struggling with. The truths are that God is sovereign (reigns over my body, as small on the universe scale as it is) and knows the outcome of all of this. He can (and maybe has) cure me, and Him only. Focusing on my circumstances is not going to help me get through this; focusing on my God, and Who He is, will help me get through this because that is where my confidence lies - in God and God alone. This is not always how I feel nor even sometimes what I think when I'm "stuck", but feelings do not always reveal the truth. I am praying that God will guide us on the path that He wants us to take, and I would so prefer it not to be chemo. However, the choice is not mine nor do I really want it to be.

In the midst of all of this, there are some weird puzzle pieces that I'm not sure where they fit. It's interesting that twice this past week, "people" had discussions with me that raise doubts about the chemo. As you can imagine, this rattled me. God, what is Your purpose in this? Is it to make me question and then come out more resolved than ever? Is it to change my course of treatment? Is it to make me pose certain questions to the dr.? Is it to make me come to a point where I relinquish more control that I'm not realizing I'm harboring? (I know that giving up control is a theme throughout all of this - "Be still and know that I am God." has been my theme verse since being pregnant.) I also have been reading "When I Lay My Isaac Down", and these verses in Genesis were again brought to my attention from a different direction this weekend. Is there something I need to surrender - my health, perhaps? By this I don't mean not want to be healthy but rather surrender good health to God's perfect plan, whatever that means. Yikes!

OK. So I've shared my personal thoughts, but I really don't want feedback. This request is for my mental health, so please be respectful of it. In general, I really value feedback, but in this case, I really can't work through all the opinions.

Kids Update

Ethan is now 9.5 pounds and in the 10% on the full-term baby growth chart! Dr. H was very pleased with his progress. He has also started smiling; his first one was for Anderson! He doesn't smile all that often, but when he does, we're thrilled. We have also found low-iron formula (supplement for the breastmilk), which is a huge blessing as the other was making his belly very upset. Jason had to drive to Hooksett for it and then we met him in Northwood at 10pm. It's precious stuff! Oh, and Ethan is sleeping through the night: 11-7 at least. He has also decided that he has preferences, so he no longer is the baby who doesn't cry. That's OK though!

Lyndsey is still working on the potty training. It's an uphill battle. She's very good at driving the Hot Wheels jeep, and she's back to unlimited use of her arm/shoulder. She is saying some really funny things, which makes me smile. She is a big helper with "Nefan" and loves him to pieces, literally. She also loves to laugh and fool around with Anderson.

Anderson will be finishing up daycare at the end of June. We went to a kindergarden informational meeting a week ago. I can't believe we'll have a child in school! He's very excited about it. In the meantime, he's been practicing casting (to fish with Daddy) on the back lawn and is very attentive to Ethan's physical and emotional needs. He's also attentive to Lyndsey's needs, although she doesn't always agree what they are. They have started the sibling fighting...great fun. Leader/Bossy oldest combined with Strong-willed second is a tough combo. Wait until Ethan joins the fray!

Birthday Blessings

Boy, did God show His love to me on my birthday; I am humbled and amazed.

The day started with me having a bad attitude. I woke up feeling bad that it was my birthday and I was feeling so crappy. Honestly, I wanted to just bypass the whole thing. However, God quickly convicted me that this was not a good attitude, and I confessed. I proceeded to get out of bed and drag myself to women's Bible study. My energy levels were so low, and I was still battling nausea, but I knew it would do wonders for my soul.

I won't give you the play-by-play, but the day was FILLED with people doing things to just make me feel so loved and special. From cards to well wishes to a birthday party brought to me (with party hats, noise makers, a balloon and flowers, cake, and best of all, family) to hearing my kids sing "Happy Birthday" to me TWICE to gifts including the doorbell ringing many times with somebody delivering plants, fruit, flowers. I was blown away. Perhaps the best part was the many expressions from people's hearts about their feelings of me being in their life. I do not deserve these birthday blessings, but I am so thankful. Who would have thought that my birthday would be so opposite of what I had expected? Isn't God gracious.

Laughs from the Kids

This is WAY late, but I've been wanting to share it. Back a few weeks ago when the weather was HOT, the kids wanted to run in the sprinklers. So, we got them into their swimsuits, and I was preparing Ethan's bottle so I could feed him on the porch and watch the kids. My Mom came in laughing. She had found Lyndsey buck naked on the porch and overheard Anderson scolding her that the police were going to come take her to jail because "we're not supposed to be naked outside". (No, I didn't tell them that! Can you guess who probably did?!) Apparently, Lyndsey had taken her swimsuit off because she didn't want to get it wet. 8)

Cycle 1 Almost Over

I'm exhausted and nauseated, but I'm home. In some ways this is harder as I'm aware of what the kids are up to and have more opportunity to worry about them. This is really hard as Bob is in charge and wants to do yard work. 8) I know that he's fully capable, but I struggle not to worry about Ethan being outside with Daddy (Is he riding in the cart behind the lawn mower - what will that do to his ears?), the kids getting out of sight but him not realizing it, whether they're being eaten alive by bugs. What does this boil down to? It's not just about trusting Bob's parenting skills; he's really a very good Daddy. It's about trusting my Heavenly Father to care for the kids and put awareness in Bob's mind and heart, just like He does in mine, to help us care for the kids. Oh, this is a challenge.

So we found out yesterday that my chemo schedule is a little bit shorter than we had thought, in the sense that ther eare only 21 days between the end of a cycle and the beginning of the next cycle. We had thought that it would be 3 calendar weeks, which would actually be 7 extra days. So, that's good news.

Chemo Update

We've found that once again things don't go as they seem they will when we're talking about medical procedures here. It can be very frustrating, but God is helping me keep my cool for the most part. Maybe some of it was that I was so emotionally exhausted yesterday that being angry or frustrated just wasn't going to happen. I am so thankful that I have 2 weeks off before coming back as my tolerance for the pricks and proddings is very low. By the end of the day, my eyelids were red and puffy - not attractive. Oh well.

My 10:30 procedure ended up being at about 11:30. The staff was very nice (although the IV placement nearly sent me through the roof; the nurse said "This is gonna hurt pretty good" as a warning. She was right, but at least it didn't hurt after it was in.). I wasn't aware of any of the port placement, another good thing. I felt such relief when it was over. We ended up waiting in a shared waiting area for another 3 hours as my bed wasn't ready for me on the cancer floor (in spite of assurances that a bed would be ready around noon - something must have happened that they didn't expect). So, this gave it time for the litakain to wear off, and the nurse gave me 2 Tylenol to take care of the pain. Needless to say, when I ended up on my floor, my nurses retruned me to oxycodone for the next 12 hours. Thank You, Lord. Also, while in the waiting area, there was a 5 year old boy in the curtained area beside me. He was havigna really tough time, and my heart was full of gratitude that my children are not dealing with cancer in this way.

So, last night, I had infusions of both drugs, starting at 7 pm. I had been warned that some people get sick adn throw up during the infusions or afterward. I was really praying against this, and God spared me. Although I feel sick to my stomach, the medications help. I'm hoping this will be the worst of it as I'm receiving my second bout of the 2 drugs right now...queasy but not puking. We'll leave first thing tomorrow morning. (If I had received my treatment even 1 hour earlier yesterday, I might have been able to leave tonight, but God knows best.)

During the afternoon, they disconnected me from the IV pole so that Bob and I could go get some fresh air. He wheelchaired me over to Yawkey 9 where there is a store for cancer patients. I bought a cute hat that might be a cooler option for dressing up more but not wearing the wig (maybe if the wig needs a break). It was tiring but good to get out just a little bit. Bob broke the wheelchair comign back across the construction sidewalks. Fortunately, we were able to trade out for a fresh one petty soon. 8)

So if all goes well, tomorrow we'll be home before noon and my worst struggles will be a week or so of fatigue and slight nausea. One cycle down!

"Oh, where is my hairbrush?"

You might be wondering what's going on with the hair situation. God has been good to provide a really good place to purchase a hair replacement system (like a wig); they have already proven themselves very supportive and attentive. I woke up Sat. morning with my hair hurting, a sign that the hair loss will happen soon. As instructed, I called to notify them as this is earlier than expected. Even though they were closed, they called back within 15 minutes and had suggestions and encouragement. Thank You, Lord. (By the way, I won't be able to use my own hair for the wig nor sell it. I'm hoping to be able to donate it but haven't had a chance to go on-line and get the details of how to go about it. I'll cut it last minute.)

So, when I woke up with my hair hurting (feels like after I've pulled my hair back too tightly), I was pretty upset. Theoretically, this shouldn't be happening until more than a week after my adriamycin treatment (which is this Wed.). So, as you can imagine, I started to cry. I was really hoping to have my own hair on my birthday, and this development made that look improbable. I was disappointed. Well, the point of this story is that Lyndsey asked me, "Mumma, why you cryin'?" I told her that I was sad because I would be losing my hair soon. Her response, "I will save yours hairs." How precious.

[For those of you who don't have preschoolers, the title of the posting is part of a Veggie Tales silly song.]