need joy, have joy

I hear a lot about how strong I am, but lately I can tell you that I've been nothing but weak, both physically and emotionally. I'm not sure why, but a lot has been making me cry lately. Sometimes there's a reason for it, sometimes the tears just come down for no reason.

My husband continues to be so wonderful, basically having to do everything for me.

We will continue with Cyberknife on Monday and Tuesday afternoon.

My kids, especially Ella when she tells me I'm bald, still make me giggle.

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If you can, said Jesus. Everything is possible for him who believes.

Maybe you can understand this better than I can

So here's the latest. I'm not having any more tests. The more tests I get, the more messed up results I get. Okay, I'm not that stupid, but the thought crosses my mind.

First here's the good news. There is no cancer in my hip. There was never any reason to think this, except that this is a common place for some cancers like mine to spread, so doing the MRI on my hip was really a precautionary measure. Also there is nothing cancerous in the bone in my leg. Since I have some numbness in my knee and still pain from my groin down my leg, this was a concern, but the MRI showed nothing, and it's probably just a side effect of the lumbar puncture done last week.

Also, I found out after further explanation from my husband, that cancer that I thought was shown in my spine, was actually in my spinal fluid. This makes a difference. The spinal fluid is around my brain, or in my brain, or at the bottom of my brain...or something like that. That which they found on the MRI, was not necessarily IN the spine. Of course, as usual, I often get medical details wrong...so I could continue to be wrong. Anyhow, the spinal fluid would eventually go into the spine. We're hoping that this did not happen, but it is still very concerning. and is a possibility. At least we know that the spinal fluid with the cancer that was in the brain, is being killed by the radiation that I'm currently receiving.

The bad news is that they might not have actually gotten all the cancer out of my brain. This was always a possibility. The doctors have described it like peeling an orange, or an apple or something like that. Although you might cut away all the cancer, there might be a thin layer left over, which is why you do chemo and/or radiation, to kill anything that may be lingering. When I had an MRI after my surgery, there was a thin layer that "lit" up, which could have been cancer left over, or it could have been "surgical change," which I don't get what that is, but it's supposed to be nothing to worry about. Seems like mine is probably actually something to worry about. Although, it's good to know that they've been doing radiation, therefore treating what might still be lingering cancer the way they would anyhow. Now there is also some discussion around whether it's possible/necessary /safe to do chemo now, or when I'm all done with radiation. And then there are some different options for the type of chemo, one that my doctor today said is "nothing to write home about."

Fortunately, I have this awesome husband who continues to be my amazing, medical, super-smart advocate. He's been contacting all sorts of medical personnel around the nation. Many of you don't know my husband and what he's battled to be where he is as a physician today, but just know that he is one determined man. Today, to get information about a particular chemo, he not only read the studies on the chemo, he contacted the doctor who actually did the studies. I am one blessed woman to have him as my husband.

Now my head is spinning just rereading all this very dumbed down medical jargon of mine. Just keep up the praying, and keep the faith with me.


Psalm 30:2 O LORD my God, I cried unto thee, and thou hast healed me.
Jeremiah 17:14 Heal me, O LORD, and I shall be healed; save me, and I shall be saved: for thou art my praise.
Jeremiah 30:17(a) For I will restore health unto thee, and I will heal thee of thy wounds, saith the LORD;

Seeking the same

Probably the hardest part about all this cancer is watching my kids have to deal with it. I don't want their memories of their childhood to center around mommy being sick. Last year, when I was first diagnosed with breast cancer, I did everything to try to keep the kids' lives as "normal" as possible. I signed them up for the same activities. I continued to volunteer in Cameron and Max's classroom. And when a new video came out, we still had "movie night" at our house, inviting some of the neighborhood kids over. It wasn't always easy, but it was something I felt was important to me and my family.

Of course I'm trying to have the same attitude with this new cancer. And that's part of the reason why the pain I'm experiencing is so frustrating to me. Basically, it's preventing me from creating a "normal" life for my kids. The pain that I'm experiencing makes it hard for me to want to do anything. So to counteract that, I have to take a bunch of pain meds, all of which claim to cause drowsiness. So I am constantly fatigued.

Today Cameron had an early football game. There was no way I was going to have all the kids ready for an 8:30 AM game. Thankfully Melvin was able to take him, because Cameron gets really sad if one of us is not there. Afterwards, the kids had a birthday party for Max's best friend, but I was so nauseous from what I think were the pain meds, that I could do nothing but lie on the couch and wait for Melvin to come home from the football game. There was no way I was going to be able to hang out with all three kids at this party, which was the original plan. Thankfully, my husband told me to go back to bed, and he got all the kids to the party, and hung out with them there for a couple hours, while I slept. If you knew my husband, you'd know that hanging around a bunch of kids he doesn't really know, is not even close to his idea of fun. That's one of those understood things that I do as a mom, not him. So the fact that he stepped forward and did this for me and the kids meant so much to me.

I felt much better later in the day, and just hung around the house with Cameron and Max, while Ella was napping. Although it felt good just being with my kids while they played video games, I still felt bad that my illness was keeping us from having one of our normal family outings. It would have been the perfect day to take Ugly Betty out on the river, but I just did not feel well enough to do so. Part of me told myself to just suck it up and go out there so your husband and kids could have a good time. But the other part of me knew that I'd be feeling awful, and wouldn't be able to help out with anything. So instead of hanging out on the water, we ate out at Red Lobster, which usually turns into quite a disastrous affair, but actually turned out to be a nice family dinner this evening. Not as fun as a boat trip, but I still enjoyed having dinner with the kids, and my crab legs (the ones Ella didn't get her hands on) were delicious.

Tomorrow is church, which is something that's really important to me. I learn so much from each service, and I just feel right when I leave there. I know that people are praying for me, and it makes a difference. I also feel it is important that the kids have a place where they can go to learn about our Lord in a safe and exciting setting. I am very impressed by the kids' program and will do everything I can to keep this as a constant for my little blessings. We also have a favorite breakfast place where we do brunch after church. Eli, the chef and I think owner, of Khoury's in Inver Grove Heights, is a man of God who even prayed over me when he found out I was going in for more surgery. The kids, and my husband and I, look forward to dining at this restaurant, so it's another important part of our family time that I'd like to keep in place, despite the difficulties I might be facing.

I guess right now it's a bit of a balancing game. My husband says that I need to rest and relax and allow my body to heal and get better. And yet, I have these wonderful kids before me that I still need to be a mom to. You can't very well be a good mom lying in bed all day. I pray that this pain goes away. That it disappears as quickly as it came on, so that I can do my "job" as mom and wife. So that my family does not have to constantly be told that mommy can't do something because she's not feeling well. And we can continue to live the life that our glorious God has laid out for us.

(And besides, it's cutting into my blogging time as well. Which is why I haven't posted in a couple days. I usually blog at night right before bed, but the meds I'm on just knock me out. This is not making me happy! Doing my blog is the one thing I do for me. I can't run anymore. I can't drink my wine. And now I can't write? Oh no, that's not going to happen!)

Popping Pills...a lot of them!!!

I met another neurologist today. She was quite thorough, and she just came across as very knowledgeable and easy to talk to. She didn't seem sad like some of the other medical professionals I've come in contact with....sad meaning they feel bad that this is happening to me. She was more of a "let's get down to business and figure this out"...I liked that a lot.

I gave her my list of symptoms, prefacing them with the statement that I am NOT a hypochondriac, despite what it my list might indicate.

Her thoughts on the intense pain problem mirrored my husbands....nerve pain. I had a lot of nerve pain a few days after my mastectomy. I was given a medication called Neurontin, actually something they give to people with epilepsy. The pain gradually went away, and after a few weeks, I was able to stop taking it completely. Let's pray that the medicine works the same with this new pain. I hope it works quickly as well because although I can't remember exactly how I felt on the medication, I remember saying that the Neurontin was making me neurotic!

I am on so many different medications right now it's just crazy! I finally started writing down each pill I took because I kept forgetting throughout the day when and what I had consumed.

As an example, here's what I took today.

6AM
Tylenol...for my headache.

8AM
Zoloft...so I'm not so crabby.
Indomethacin...for my headaches...what the first neurologist prescribed to me when the migraine shot of Imatrex did not work. If after tomorrow if the headaches aren't better, I can discontinue this prescription.

2:30PM
Vicodin--for head pain and all my other pains. Today my back was hurting more, as was my ear. This pill makes me very sleepy, but works fairly well for the pain.

4:40PM
Neurontin--for my nerve pain...what we hope will stop all this pain. This is my new medicine that I pray works. It also makes me sleepy. This will be great at night, but all these "may cause drowsiness" drugs are going to be difficult to deal with during the day.

5:00PM
Tylenol -- for headache.
Multi-vitamin

6:20PM
Indomethecin-- as stated above, for headaches.

8:30PM
Nystatin--a mouthwash for sores on my tongue. I'm supposed to do this 4 times a day, but I keep forgetting.
Neurontin--as stated before, for the nerve pain. Normally my two doses will be spaced out more, but I didn't get them from the pharmacy until later today.
Vicodin--as stated before, for pain.

As you can see, I'm taking a lot of medications. Just another reason why I am so incredibly thankful that I have my husband to help me figure out how safe it is to take the drugs and the combination of them. I would think I was overdosing taking all these different pills, but having him to supervise my intake of medicines puts me at peace that everything will be just fine.

But my combo of Vicodin and Neurontin makes me VERY SLEEPY. I can barely keep my eyes open as I write this post. So with that, I think I better publish my post and get some much needed sleep.

Goodnight...and gold stars to everyone who thought about my problem today!!!! Thanks for the input!

The medical mystery...possible solution tomorrow.

Still more pain today...but I had it managed with Vicodin, so it wasn't as bad. I also took the Ativan last night. I just decided that I will go ahead and take the sleep pills and pain pills as I need them until all this gets worked out. Because I do need my rest. So if that means taking a pill each night to help me get it, then I'll do that.

I was telling my husband last night that I felt like we were working on a puzzle and that there was one very important piece missing. And if we could just find that one piece, that one bit of information, then we could figure out what was wrong with me. I just feel like all these symptoms are connected, and that all these little actions...pain killers, special mouth rinse, migraine medicine, antibiotic for my earache, etc...all these solutions to deal with each individual problem is not the answer.

My husband said that one of the reasons why no one has figured out a solution yet is because I haven't been consistent in describing all of my symptoms to my different doctors and to him. That's because I have so many different symptoms, I would forget things when talking to the doctor. Or the doctor would just focus on my pain and was mostly concerned about making me feel better, rather than trying to find out the reason behind my pain. Or I'd just address what was bothering me the most at the moment, fearing that I was sounding like some crazy hypochondriac. When I thought about it, my husband was right (he'll LOVE that I just wrote that).

My husband said that by not telling it all, I was making it difficult for any doctor to address my problems. So yesterday my wonderful mother (who has all my appointments and phone calls laid out on organized spreadsheets) typed up a list of all my symptoms. If you're a doctor, feel free to get out those gigantic medical books and do some research. A gold star to anyone with the right answer! Here are the symptoms:

Unbearable pain on upper right side of head.
Unbearable pain on the lower right side of head.
(Note, my surgery sight was on the left side of my head)
Head pain worsens at night or when I'm really tired.
Right eye pain
Right ear pain (no ear infection)
A little dried blood from right nostril when blowing nose.
Right neck hurts...I think around glands.
Feels like sores on right side of tongue.
Right side of tongue a little numb and I keep biting it...ouch!
A little difficult to swallow on right side and hard to move food around in my mouth with my tongue on the right side (I know that sounds silly...but it's true).
Pain on right side of back
Trouble falling asleep
Trouble staying asleep

Okay, now go for it. Any ideas? Come on...you know you need a gold star!

Possible Answer: Once I went over everything with my husband, he immediately said something about Cranial Nerve #7....or maybe it was #6...I can't remember. But it had to do something with the nerve. Which makes total sense to me. I had nerve pain (see Sept. 19 2007 post) after my mastectomy that we dealt with with medicine, and it eventually went away.

Today, my husband was actually able to talk to the neurologist who my surgeon initially referred me to (not the one I went to yesterday). So I'm hoping tomorrow to have some answers...and to be on the pathway to being rid of all this ridiculous pain.

Being Loved

My huband is a saint. Really. Today, he took all three kids to the State Fair. I didn't even ask him to, because my head was hurting so badly all day I knew I wasn't in any condition to bring my kids anywhere, let alone the statefair. But my wonderful husband took them, and I'm just so happy that he did this for them.

He continues to amaze me with his patience with me and the kids as we deal with all that has been so unexpected. He continues to remain calm, strong, logical and faithful throughout all of this.

AND, after his long day with the kids, he still sought out and brought me back some Sweet Martha's Cookies. I was truly impressed.

I truly cannot ask for a better husband.


Love Is Patient
Love is patient, love is kind.It does not envy, it does not boast,it is not proud. It is not rude,it is not self-seeking,it is not easily agered,it keeps no record of wrongs. Love does not delight in evilbut rejoices with the truth.It always protects, always trusts,always hopes, always perseveres.Love never fails. . . . And now these three remain:faith, hope and love. But the greatest of these is love.
I Corinthians 13:4-8, 13 (NIV)

Just a brief list

I want to document my experience better.

I want to write all about the wonderful people at church and at a local restaurant (Khoury's) who embraced me with their love and prayers today.

I want to tell everyone how grateful I am that my parents are here to support me.

I want to tell everyone how Cameron reacted, sad because he doesn't want me to have cancer again.

I want to thank all my friends and neighbors for just everything.

I want to write about my frustration about getting numbers all mixed up, and my inability to recognize my "normal" confusion with my tumor confusion.

I want to write all about how incredibly grateful I am to my husband for all the phone calls he's making and appointments he's setting up and just his patience with me.

But my head hurts...bad. Sometimes it's better than other times, but mostly it just feels like someone took a baseball bat and smashed me in the back of my head.....not that anyone has ever done that...but it's how I imagine it must feel.

I want to continue to be honest.

So I'll keep writing...but it might be limited.


Deuteronomy 31
31:8 The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."

It's all gone.

All went well today. I'm now Port-free!

All the doctors and nurses and technicians were really kind and wonderful. My husband cancelled all of his patients this morning so that he could be with me, and for that I am so thankful. When I arrived home in the late morning, I took a Vicodin and just crashed into the early afternoon while Sara cared for the kids. The rest of the day I was a little groggy, and somewhat sore where the operation took place, but I guess all that's to be expected. Daily life went on as usual.

I'm interested to see what sort of mark the surgeon left, but I can't take off the bandage until tomorrow. Actually, I'm not even sure how I'm going to manage to pull off this heavy-duty vinyl-like tape without ripping my skin off as well.

Thank you to everyone for your thoughts, well-wishes, and prayers for a successful procedure.

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And speaking of prayers, please continue to pray for my friend Andrea and her family, as she continues to give life to and have hope for and faith in the healing of Nathaniel. Please encourage others to pray as well. Andrea really is an amazing person and I'm so touched by her strength and faith these past few months.

It's a start

Here it is a new year and I got to use my hairdryer today!

No, not for my hair…don’t think I need a dryer for ½ millimeter of sparse hair growth.

I used the dryer to help expedite the melting of the ice that formed in the back of the freezer when our water valve broke and apparently leaked H20, which of course turned into ice, coating the back of the freezer with about 6+ inches of the frozen stuff!

So for most of the day I had the privilege of emptying the refrigerator and freezer, cleaning out every drawer, shelf and wire basket, and now trying to make this damn ice melt.

I want to get it to melt tonight so that all my refrigerator food does not freeze, as it sits in the cooler outside in….well…below-freezing temps.

In addition to my fridge duty, I began the year:

* Ignoring, but still putting up with, this sinus infection.

* Getting in an argument with my husband about the initiative I don’t take around the house.

* Dealing with a very crabby, feverish 2 year old.

* Consoling an injured 3 year old who pinched his hand, removing a tiny patch of skin on his palm, while playing with some Cub Scout flashlight contraption

* Allowing my 6 year old to play Playstation for way too many hours.

I hope this first day is not an indication of how the rest of my year is going to be. I’m going to try to look at it as getting the bad stuff out of the way first to make way for all the wonderful days ahead!

Hey, at least I'll start the year with a clean fridge...a VERY clean fridge at that!

We're okay.

On the rare occassion that I go away for the weekend, I feel guilty leaving my husband with all the kids. However, I don't believe he feels the same.

Take for instance yesterday morning....he called not to see how I was doing..not to see how it was going with the kids...not to see if how I was coping....

...but rather, knowing how freezing it is in Minnesota, he called to inform me that he was walking around Panama City Beach...without a coat.

That's just cruel.

GET UP!!!!!

When my husband hasn’t gotten much sleep, but finally is snoozing, and I must wake him up…for a call from the hospital or for his morning alarm, he can be pretty…well...illogical. Sometimes it’s quite funny, but sometimes he has an attitude that is just nasty. In his defense, he usually has absolutely no idea what he’s saying.

Take this morning for instance. I think he didn’t go to bed until way after midnight….which is normal for him. At about 4:45, Ella was screaming. So I ended up giving her milk and falling back to sleep with her on the couch in the family room. By the time we woke up again, it was around 5:30. I placed her back in her bed, and headed to my room. I check the alarm, and realized that my husband had set it for 6:00 AM.

This made absolutely no sense to me, because he had a plane to catch to Panama City Beach, Florida at 7 AM. So I nudged my snoring husband and tried to wake him up.
“Melvin, don’t you want to get up? You set the alarm for 6 o’clock, but your plane leaves at 7.”
“Yes, I know,” he said, but immediately the snoring resumed.
“No Melvin. You have to get up. There is now way you can wake up at 6 and still make the 7 o’clock flight.”
“I’ll make it!” he said, rather annoyed that I was bothering him.
“No you won’t Melvin,” I persisted. “There is no way you can get up, get a shower, drive to the airport, park, get through security and get to the plane in time.”
“Yes I can!” he responded, even more upset than before. “I’ll make it!” he said, downright rude.

Now here’s where I have a choice to make. I can either A…get terribly irritated back with him and just turn over and go back to sleep. I tried to wake him up, he was rude to , me, his loss. Plus, if I did this, I wouldn’t be all alone with my 3 munchkins all weekend. Or I can B….realize that he’s really not awake and if he had any clue what was really going on, he would have leaped from the bed, probably forgone the shower and headed directly to the airport.

I take things very personally, so it was hard not to get angry, but I didn’t, and just persisted. Eventually he woke up……

But he still missed his 7 o’clock plane.

However, he made flew standby on a 10 o’clock flight.

I hope he’s enjoying the peace and solitude and warmth of the Gulf coast. Because my kids spent dinner screaming “fatty head” and other names at each other because they thought it was funny. And, it’s below zero….again.