We're doing the right thing

My husband and I spent another day at the Mayo Clinic in Rochester. From our entire trip, we basically learned that we don't have to travel over an hour to get the best medical care. Not only did the Mayo doctors praise our neurosurgeon and the amazing job he did, but they also confirmed the treatment regiment prescribed by my radiation oncologist. They also agreed with radiation and chemo treatment I had already been given. Furthermore, they agreed that unless my new tests revealed new cancer or new information suggesting otherwise, I would not need chemotherapy (YEAH!)

Except for adding a tumor marker test, and the test for a brain fungus, the doctors at Mayo did not give us any new information. However, we don't feel the trip was useless, as it was reassuring to know that we're doing the right thing, and that's what's most important. It was good to be able to run our plan of action by the experts, and to have them answer our...well my husband's...questions.

Like the second neurologist I saw here in the the Twin Cities, the neurologist in Mayo suggested I have a Lumbar Puncture. I am SO grateful to all the people who commented on my blog or sent me private e-mails letting me know that the spinal tap would not be that bad, similar to an epidural. Just knowing that, erased all my fears, and I went into the test with zero anxiety. And everyone was right; the test actually was not bad at all. I've had blood draws that were more painful. The most pain actually came afterwards. My back is quite sore at the puncture site. But that should go away. And hopefully, the headache that can occur about a day later, will not surface. Because I don't think I could handle a severe headache on top of the ones I already have.

Speaking of headaches....no new information about mine. Aside from the possibility that the headaches could be caused by a fungus, which the spinal tap could reveal, my visit to Mayo did not lead me any closer to a solution to my pain and numbness. I'm just going to keep taking the meds prescribed to me and pray that something starts working soon.

A special thank you to my wonderful mother who without complaint continues to care for my kids, and doesn't even hesitate to tell me to go away and enjoy myself. Although it would have been better hanging out under different circumstances, it was still fun spending time alone with my husband. So thanks mom!

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.

In the words of Shakespeare...To sleep, perchance to dream

I continue to have sleep and headache issues. First of all, as I think I stated before, I can't sleep. Ever since I had my surgery, I just physically cannot sleep. It's not nerves or anything like that. I will be wide awake, fall asleep for about 40 minutes, and then be wide awake for hours again. However, although I'm awake, my body and mind are tired. It really took its toll on me yesterday. As the day drug on, so did I. And although I could not sleep, I also could not think or process information very well, no doubt as a result of not sleeping. I read a blog about someone else who has brain tumors, and she too could not sleep. She takes Ativan so that she can sleep now. I do this occaisonally, but I hate to keep taking a sleeping pill, along with all my other pain meds.

The biggest problem I have when I don't sleep is that my headaches worsen, which of course makes it even harder to sleep. It's a ridiculous cycle. Once the pain starts, which is incredibly unbearable, it won't go away, even with Percocet. I had an appointment with an internal medicine doctor today for some slight sinusitus that the MRI showed...which I don't have. (And the entire time the doctor is talking to me, he's mumbling in between his sentences, "Oh God bless you. God bless you," in his Saudi Arabian accent. He makes me smile.) After I told him about my pain and sleep issues, he immediately sent me to see a neurologist. (Thank you to nurse Sara for driving me down the street to my appt while my mom had the kids at McDonalds).

I was go grateful to get in to see the specialist immediately because I was in so much pain at this point I was almost in tears. Plus, last year when I was making an appointment for Cameron with a neurologist, it took me over a month before the neurologist had an opening. This is doctor was also very kind and concerned about my pain and just very concerned about all that I had been through. He actually took my hand and asked me how I was doing with all this, and I told him that except for the pain, I really am okay with everything. (He also had this big gold ring that said, "Dad" so I imagined anyone who'd wear a ring like that must really love his kids, which made me like him even more, as a person).

For the pain he gave me a shot of Imitrex, which is what they give to people who have really bad migranes. Unfortunately, it didn't do anything for my headache. And the doctor didn't have an answer as to what would be causing this pain. Quite the medical mystery I am I guess. He sent me home with another prescription that may work to take away the headaches, but overall, I have no idea as to why I'm having these. I don't want to keep popping a bunch of pain killers. There has to be a reason for this. But not even my neurosurgeon, who my husband called last night, had any ideas as to why I'm having these headaches. Maybe someone at Mayo can shed some light next week because I'm really tired of this dominating our lives. I couldn't even go to Cameron's football game today, because of the pain, and he was really sad about this, which in turn made me really sad.

-----------------------------------------------------

On a completely different subject, a couple people have asked me about some messages that they sent me....messages I have NO recollection of. The first two weeks after surgery, I was so drugged up, or so filled with anxiety, that there were a lot of e-mails that I think I read, but never actually processed or remembered. So if it seems like I'm ignoring you, really, I'm not. And I apologize sincerely. If you pop me a note again, I'll try to answer it this time...if my head doesn't feel like it's in a vicegrip! (I'm only able to write now because my Vicodin has kicked in quite nicely).
-----------------------------------------------------

Football season has begun for Cameron. That is a post in and of itself, but for now, I'll just say that HE is loving it! Thankfully I have WONDERFUL neighbors who told me that they will take him and bring him home from every practice and game, so that I don't have to worry about that at all. I still try to make at least his games (which are 2, sometimes 3, times a week), but I know I won't be making all of them...like tonight's game. Now I'm not trying to buy forgiveness from my son, but I know that he'd be SO excited if I got him something to wear from his favorite team....the University of Minnesota Gophers. Plus, my husband just called and said he got a touchdown...his first one...so now I'm really bummed that I missed his game. But anyhow, I'm looking for a Univ. of Minnesota fall ZIP-UP jacket for him to wear. He's about a size 8. So if anyone happens to come across one, can you please let me know. I'm going to go online tomorrow and see what I can find. THANKS!

-----------------------------------------------------------------

Moreover, let us exult and triumph in our troubles and rejoice in our sufferings, knowing that pressure and affliction and hardship produce patient and unswerving endurance. And endurance develops maturity of character. And character producs joyful and confident hope of eternal salvation! Such hope never disappoints or deludes or shames us, for God's love has been poured out in our hearts through the Holy Spirit Who has been given to us.
Romans 5:3-5

Say it ain't so!

Yesterday was my best day yet, in terms of energy and just feeling great and normal.

But last night was my worst night in terms of pain from my headaches. Not even the Percocet did anything to take away the pain. This is the first time I was brought to tears it hurt so badly.

I will be visiting with a neurologist sometime next week. And during the following week, I'm going down to the Mayo Clinic in Rochester to get some 2nd opinions about treatment options. I'm hoping one of these doctors can address my headache issue.

My husband thinks the headaches were so bad because I had a glass of wine last night and that I really should not drink anymore wine. SURELY there's another explanation. If not....um....um...I just need to remain speechless on this issue right now.

Update: Good news...I had more unbearable headaches last night. So what's the good news? That means it wasn't the wine causing them...hey, gotta look for the good somewhere!


--------------------------------------------------------------------------
Have you not known? Have you not heard? The everlasting God, the Lord, the Creator of the ends of the earth, neither faints nor is weary. There is no searching of His understanding. He gives power to the weak, and to those who have no might He increases strength. Even the youths shall faint and be weary, and the young men shall utterly fall. But those who wait on the Lord shall renew their strength: they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint."

Painful

I had an MRI yesterday of my head and spine. It was a 3 1/2 hour MRI. Which means I had to listen to jackhammer like noises reverbrating throughout my already aching head for 3 1/2 hours, while I had to lie completely still. They did give me 2 bathroom breaks, and I guess when it took them 4 times to inject some dy in me one could call that a break as well. It was not a fun day.

Not what I expected.

(See Update Below)

For the past month I've been having headaches. I didn't think too much of them until a bad migraine last week and then just continued headaches throughout the week. Yesterday it was bad. I felt that my head was going to explode! A couple times I could feel my head throbbing.

So I finally called the doctor, and the nurse said that although it's probably just my body adjusting to all my running and exercise, we'd do an MRI of my brain just to make sure and put myself at ease.

Well, it's not something I can just brush off. The doctor who read the scan (it was late at night so it wasn't my regular oncologist), told me that there's a 1 1/2 inch spot on my brain. That's what's causing all the pain. They gave me steroids to relieve the pressure. It feels better. But I was up all night last night.

I will probably have the lesion biopsyed or removed entirely.

I know nothing else, except that if it's the triple negative variety breast cancer mestasticized to my brain, then that's not really good. If it's a totally separate kind of cancer, that's actually better news apparently. Or maybe it's just some cute little adorable dot just decorating my brain...I heard that's the latest style!

I'll update when I have more info.

Update

So here's the deal. After my oncologist and general surgeon looked at the report, they said it's most likely cancer.

You're probably wondering how that can happen if I just had a scan that said I was all free and clear....well, what I thought was a full body scan, was only a scan in the breast and chest area. They only do the whole body if there are other symptoms. I didn't know that obviously. With my cancer being Triple Negative breast cancer, and being so aggressive, I'm surprised that they didn't do an entire scan. Needless to say, I'm not happy about that, but oh well.

I will have a PET scan tomorrow, that will scan me from my knees to my neck (they don't need to do my brain since the more precise MRI was completed yesterday). I sure hope no cancer in my tippy toes appears, since apparently that area will be bypassed.

Then on Friday I will meet with a neurosurgeon. He'll read the scans and then we'll decide a plan of action from there. If the tumor can be removed, then that will be the plan, along with radiation. If not, I will just have radiation.

I have no idea when I'll have the surgery, or where I'll even have it. How do you know who the best doctor is? We have the renowned Mayo Clinic nearby, but is that really the best place to go for my situation?

So we obviously need some serious prayer.

On a good note, the steroids are sill working and my head doesn't hurt. On a bad note, they keep me up....I can't sleep. But on a good note again...with my new found steroid induced energy, I'm being very productive!