A great community

As we left church this morning, I mentioned to Tim how much it meant to me. I just had a truly wonderful morning. It's not only a building for gathering, but a church is a community of fellowship and friends. In the past we would attend church and immediately get in the car to go home. This is not the case these days. We share conversations, get personal health updates and just plain talk. Teenagers gather around and sit as a group which is so nice to see, especially in this time. It reminds me of Cheers in a way, where no one is a stranger for a long time. It's a place for caring and sharing. Hard to explain but I know that for now we're in a good place!

Triple Shot Injections (TSI) of the right shoulder

I had my last appt. of the week this a.m. with pain management doctor. He gave me a TSI (explained above) of the right shoulder. Procedure involved cleaning the area, inserting via needle an anesthetic to numb the area and a steroid similar to cortisone. This was done by having an oval shaped X-ray tube over my shoulder, showing the doctor the area that he wanted to inject the medicine. 2 of the 3 injections involved pressure but I just took it like a "man." The 3rd was put in my bursa area and I had expected it to be the worst, but it caused no pain. The whole thing took about 10-15 minutes. Explained that the anesthetic would wear off after about 7 hrs. and not to get depressed if the pain would return. And he was right on his calculations, the pain has returned but I am thinking positive thoughts. I told him I continue to fight cancer and that I have a high tolerance level. I have a follow up appt. next month. I told him about my appt. at Presbyterian Hospital next Tuesday for the EMG nerve test for upper extremities. Said that was good idea. I continue to have headache in the back of my eyes ALL day today. Took ibuprofen and sudafed in case it was sinus. I had trouble sleeping this p.m.

Just got off the phone with family. My father is finally feeling relief from his pain for the past few months. Yesterday he also had an injection in lower part of his spine. This was the second injection, different body part in 2 weeks. I know from experience that when you're used to feeling a 10 in pain level, anything is better. He told me that it's about a 4-5 now. Am praying it continues to decrease. He has been having hip issues.

Tomorrow Barry goes for his CT scans in Pittsburgh at 7 a.m. Has not received chemo since last part of January. But have to know that doctor does know best. I have not ever prayed for a miracle, but maybe it's time to. I was always content with the tumors not changing size and growing, but I'm going to ask for a miracle. Wouldn't it be great if the cancer was gone? They always say reach high.

As for Tim, he's made it through 3 days of being a senior. And liking it as usual.
First football game is tomorrow for the band, and his first soccer game is Saturday.
He keeps busy. And continues to be a great kid.

The reason I have a blog

"An event that appears inexplicable by the laws of nature and so is held to be supernatural in origin or an act of God: “Miracles are spontaneous, they cannot be summoned, but come of themselves” (Katherine Anne Porter)."



Copied from a recent post by a close friend BJ. Touched my heart like all the other comments that are posted on my blog. I don't know how to explain it, but this blog is my therapy. I use it when I'm up and also when my spirit needs to be lifted.

Thanks.

PS. Was able to get chemo today. Continue to have mild headache but was told if they were to get worse to call neurosurgeon right away. I can take ibuprofen for them. I head to pain mgt. doctor in a.m. for triple shoulder shot, X-ray guided.
Barry's driving me.

A long day at Presby....

Left the house at 9:30 a.m. and got home at about 5:30 p.m. Always a long day when you go to a Pittsburgh dr.'s appt. The highlight was actually meeting Dr. Dan and Dr. Eng the two neurosurgeons that did my brain surgery in April 2008. They were pleasantly surprised in what they saw today in me. Our previous meeting I was unconscious, unable to talk and paralyzed. They both called me a "miracle." One of my questions I had noted on a piece of paper to ask them was this: did I have a tumor or was it cancer? They said yes to both. And the cancer was from my breast cancer that traveled to the brain. Same thing happened with the cancer I now have in my lungs. I had never asked anyone but had this question in my head all these months, even though I had gone through cyberknife. I did not react in their presence but as I walked to my car and on my way home I shed some tears. Lots of tears. Even though it was in the past, any time you hear the word as part of your body it stabs you in your stomach. The phone was ringing when I got home and it was Barry, and I had been crying. I explained it to him why I was upset, he already had figured it out. His assumption is when I had the chest resection in Nov. 2007, they had to cut the main artery (not sure of spelling) as the cancer was attached to it, hence the cancer cells escaped to lungs and brain. And only God knows where else.

Eileen,
I was looking forward to meeting Dr. Dan. I remember you told me about his dimples.
I messed up my words as it happens, and said to him that he has nice "nipples." Quickly corrected myself and apologized for using the wrong word. He understood as the specific part of my brain that was infected dealt with speech.

And yes, both of the doctors are so cute.

I'm going to repeat the MRI of brain in a couple of months. And upon examining my shoulder they are scheduling me for a nerve test. Can't remember the name. It's been a long tiring day.

And tomorrow is chemo.

PS. Tim started his 2nd college course at the college where I work. Also was his first day as a Senior in high school. He will attend 2 days a week at college.
Looking forward to seeing him if he has a second or two.

Going to be a busy week

Tomorrow I head to meet my neurosurgeon for the first time. Have been experiencing minor daily headaches. Dr. Dan.

Wednesday is going to be chemo day (pushed back a day for meeting tomorrow).

Thursday I'm heading to Wexford for a "triple shot injection" on my shoulder to see if that helps with the pain. Sure do hope so.

Off to work.

Happy Birthday to my Dad..

You are the best. I love you more than you can imagine. And yes, you still are an olde fart!

Here's to both you and me getting rid of our pain together.

Happy Birthday!

Nerve block not an option

Just got back from pain mgt. and am pooped. Along with being in pain. Too tired to blog. Going for triple shoulder injection next Thursday under the X-ray to aim for the area in question. Got a script for medicine which will be delivered via UPS in a day or two. Was told my anatomy "altered", have to treat symptoms. Then I had to go for a urine drug test, which to me seemed funny as I am so against narcotics!

I just wish there was a test that would show the severity of my pain. Just haven't found it...

Appt. with Advanced Pain Mgt....

Had been scheduled for Sept. 22 which is an eternity, but through some phone calls today (between the 2 doctors offices) I've been set up for consultation tomorrow at their Wexford location! My two newest angels are Toni at the Advanced Pain Mgt. and Bonnie at my rehab. doctor's office.

I also have reached out to my Pittsburgh doctors for their input. My neurologist wants to see me next Tuesday at his clinic. He was one of my doctors who saved my life in April 2008.

Am hopeful that there will be a diagnosis, and then a plan of attack.

Had chemo today. Now heading to bed.


Updated 7 P.M.

I just took the time to do a 'search' on my blog for specific words: right shoulder, collar bone. Then I printed the entries. This pain goes back to Dec. 07.
And don't forget that I had the chest resection in Nov. 07. Bringing this as backup to my appt. tomorrow. I'm determined to find a fix.

Leroy is no longer in pain

Got my final daily email from Leroy Sievers blog. With tears in my eyes I read it. But I personally know in part the pain he's been going through for the past years and I have to pray that he no longer feels the pain. He recently mentioned hospice and getting a hospital bed, and that was a new direction in his life. And had also asked for opinions on what is to be done with his daily blog. I left my comment for him and said when he passes on it should come to the end by Laurie explaining her feelings, updating us to the funeral arrangements. It was his blog, his sharing thoughts that made us cancer survivors hear first hand what this disease takes away but also gives to you.

Here is the entry:::::::::::::::::::::::::::::::::::::::::::::::::::::
Leroy

Dear friends:

I'm so sorry to bring you this news. Leroy passed away last night. It happened very quickly.

You will hear from Laurie later. In the meantime, please let me tell you something all of you already know, how much this blog and all your comments have meant to Leroy. He felt all the affection and good wishes and strength you sent him every day. He told us that of the many things he had accomplished, he was proudest of My Cancer. The connection he felt with all of you made such a difference in his life.

I feel so privileged to have had a chance to work with Leroy and call him a friend. All of us here do. We will miss him so much, just as you will.

If you'd like to, please leave your thoughts, remembrances, anything you want to write here. I know Laurie will read them. I know you will keep her and Leroy in your thoughts and prayers today.

--Maeve McGoran

7:59 AM ET | 08-16-2008 | permalink



NPR also shows it on the following link:

http://www.npr.org/templates/story/story.php?storyId=92028479

And there is also a link on ABC news that ends with this terrific comment:

For months he kept an extra large t-shirt draped over a chair in his home, for all visitors to see. It says, simply: Cancer Sucks.


Sievers Brought Cancer Battle Public
But despite his many accomplishments as a television producer, it was Sievers' writing about his battle with colon cancer that many of his colleagues and friends believe is his greatest legacy.


When his colorectal cancer, first diagnosed in 2001, returned with a terminal diagnosis in late 2005, Sievers began writing about the experience. In a daily blog published on npr.org, weekly podcasts and occassional radio commentaries on NPR's "Morning Edition," Sievers spoke wth startling honesty about living with a cancer that he knew would one day take his life.

But with the strength and stubborness that were his hallmark as a journalist, Sievers defied the medical odds.

First told by doctors he may have only six months to live, Sievers endured a battery of often painful and experimental treatments and procedures, including two brain surgeries, three lengthy back surgeries, multiple rounds of chemotherapy, radiation and radiofrequency ablation.

Each of Sievers' blog entries began with a simple statement of purpose, "After that day, your life is never the same. 'That day' is the day the doctor tells you, 'You have cancer.' Every one of us knows someone who's had to face that news. It's scary, it's sad. But it's still life, and it's a life worth living."






I will miss him as if I've known him. But I have to know now he is no longer in pain.

Great place to work

It's been good therapy for me to get back to work part time. I work 4 hrs. in the morning, and at this time in my life I don't think I could handle any more hrs. My aches start to bother me at about 3 1/2 hrs. So many people stop to ask me how I'm doing. And you know I have to be truthful. They say that I look great. My response is often I wish I felt that way. This past week has been a difficult week for me.

But...
am truly thankful for my bosses. They work with me. Give me "special projects" to do. Keeps me busy and I like to help out. They know my limitations and have been great. In this day and age, this is uncommon. And I do appreciate it.

Next step Advanced Pain Management

The physical therapist today agreed that my situation is complex. He's very compassionate and takes the time to analyze the problem. I brought him medical reports of the surgery in Nov. 07 and my test results from July 08.

It was a very long afternoon of seeing him, and then trying to fill a prescription (that he had to have faxed from yesterday's rehab dr.) for a prescription pad. Unfortunately my insurance would not cover it and the cost for this pad is $256.00.
Someone is ripping us off. So I had to go to plan B for another medicine that is placed on a band aid type item, with a plus and a negative "battery". It's adhesive and I have to wear it for 14 hrs. Works on some theory opposites attract. Who knows. But it's been on for about 5 hrs. and I don't feel a thing. Placed on my collar bone area. The physical therapist pulled/stretched my neck and then located a spot that seems to be the cause of my pain. Collar bone area. Combination of prior surgery and being paralyzed in April.

End result is come Monday I'm going to call the Advanced Pain Mgt. in Wexford for appt. I'm losing so much energy with this chronic pain. Can't even lie down and get comfortable. Thank goodness for sleeping pill. That truly helps me sleep through the night.

I spent a few phone calls to woman at rehab doctor's office this afternoon with trying to find something comparable to the drug not covered by insurance. She has kindly offered to deliver some sample "pads" to their office in Hermitage that I can try next week. She was very helpful.

Pain update

The taping that P/T did yesterday did decrease my pain level today. Am thankful for that. It's not a miracle (yet) just a much needed "band aid." After about 3 1/2 hrs. at work I've just about had it. Would not be able to work more hrs. at this point. May eventually see dr. in Cranberry that Pretty Patti gave me information on for advanced pain medicine. About 45 mins. away. Mentioned that drs. could place a block in shoulder area to numb the possible nerve that is causing the pain.

Today I had follow up appt. with rehab. dr. that attended to me while I was in local hospital. There was no exam, me just blabbing about what I've been doing for relief. He just nodded his head and agreed with P/T I saw yesterday. No shit! I had always complained about collar bone sticking out and shoulder pain could have been caused by being paralyzed after brain surgery. (I mentioned it to him last visit). He wrote up a script for a shoulder brace if that is my eventual route. Tomorrow I meet with P/T again.

The taping has a specific name that I think starts with an M. Am wrapped up like a mummy.


Updated 9:11 PM

Unfortunately the pain has just returned to the previous level. :(

Visit to local physical therapist

At the suggestion of my friend Lisa, I made an appt. today and was seen today by a local physical therapist. I canceled the appt. I had with chiropractor.

Here is a portion of email that I sent to some people about my visit with Larry.

I was impressed with Larry. he taped my shoulder up and it is improved. going back friday. says I am truly a unique case. thinks it is combination of surgery Nov. 07 where my collar bone, ribs taken out, being paralyzed and therefore inactive muscles . something to do with my neck, also. said to take it easy. he spent more time with me than any doctor I've seen recently. Am going to bring my report from operation.
Mentioned something about first couple of ribs taken out? Worked on my neck, stretching it. Had just started to feel a tingly feeling in my right palm this week. All related.

Where do I go now?

Yesterday was one of my "better" days in the past few months, had hoped it would continue. But, pain is back in shoulder area and I'm getting very upset with it. Difficult to raise my arm up/stiffness in arm pit area and shoulder. Don't know where to go. What to do? Wish someone would come up with a diagnosis so then I could make a plan to treat it. Am tired of just using and trying "bandaids".
Very frustrated to the point that tonight while Barry and I were out to dinner I just cried. And I know that is not fair to him but the pain was unbearable. Tomorrow is going to be my last appt. with chiropractor as I've been seeing him for about 3 weeks and I don't see any difference in pain. Pain mgt. could be an option but that doesn't diagnose the problem, they just give you drugs to not feel the pain. (at this stage maybe I shouldn't worry about taking drugs) Acupuncture? My body is unique due to the extensive surgery in Nov. 07 and my recent brain tumors in April of this year.

I had blood work this afternoon and my counts were OK. Just a bit above the minimum required to receive the chemo. But it was my off week so that didn't make any difference.

PS If you see me in person, please don't mention my recurring pain as I don't want to become emotional. Just post comments.

Happy Birthday Stephanie

I want to wish my niece Stephanie a very Happy Birthday! And I want all my bloggin'
friends to do the same....

PS. Daughter of my brother the chef/restaurant owner and his wife. updated 8/11/08

Headache kind of a day

I've had about 6 or 7 appts. with chiropractor. Not sure if they are working yet as my shoulder still causes me discomfort. Each visit he uses a rolling pin contraption on the backside of my neck, yesterday's visit he noticed that my left side was very stiff so therefore worked on that side. The electic stimulation feels good while it's on. I mentioned that perhaps I would check out acupuncture and he had heard good things about that method. I'm just so tired of this pain. Call me a whiner. I do realize that there are others in worse situations and should be thankful but...

This morning I woke up with headache which I haven't had in a long time. Lasted most of the day. Even a nap after lunch didn't work. Unsure what caused it but it eventually went away. Am thinking I stopped taking the ibupofren last night (had not seen a difference in pain level) and switched to another pain reliever that my oncologist recommended. I did see that a side effect was headache but after I called pharmacy I was told that headaches were not common. Perhaps it was sign of withdrawal. Don't know. Never took another one of those pills later in day. I feel that I'm just grasping for anything at this point.

Still here

Just a quick note to say that I'm still here, just haven't posted in a day or two.
Have been working 4 hrs. each day (except for Tuesday when I got my chemo) which is enough for me. Keeps my mind busy and I am with friends.

My chiropractor gave me an exercise to do with a rubber band for my shoulder when I saw him on Monday. I wasn't able to do them on Tuesday, too tired from chemo. I'm having some discomfort in my arm, it may be a combination of the new exercise and just returning to work. I have an appt. with him tomorrow p.m. to ask about it. Each afternoon I continue to take a much needed nap.

I still have 2 checking acct. statements to balance. I used to balance them right away, but with these past few months I find they just sit there. Maybe I'll tackle them this weekend!

Able to have chemo today...

I was able to have chemo today. But it wiped me out. As soon as I got home at about 10ish I went to bed. Got up at noon for couple of hrs and then back to bed at 2:30 p.m. I guess I'm not as young as I used to be! Had zero energy once again. But I can report that my shoulder has not needed any ointment Biofreeze applied to it yet today. That's the good news.

Next week is my "off" week from chemo. Yeah! Normally my counts would have been too low to have received it so we are taking that into account and just not scheduling it. Therefore, beating the bullet.

One recent comment on my blog was from Matt K. Heck, I haven't heard from him in years. We worked together at local bank a few years ago on the Help Line. Now that was fun. (sarcastic) Then he moved to Texas with his girlfriend to work at a BIG bank. Have emailed him to see if he is still there. Was so nice hearing from him.
Brought back good memories of our friendship. Thanks, Matt.

It's true...

The old saying goes something like this: it's good to be with friends to lift your morale. Today was my first day back to work since April. It truly felt good. I worked my 4 hours as planned and then later in p.m. went to see chiropractor for scheduled treatment.

Going for chemo in a.m. (if I pass the blood test. I'll be studying hard!)

Where did July go?

One week Tim went to soccer camp at the local College where I work.
Followed by a week at a Mission Conference held at the same College, and he stayed in the dorm. I only saw him when I brought him a fan 'cause he was hot.
Came home for one day, and left this past Sunday for his last Band Camp. This is where and when they learn the songs when they march/play at football games and at parades. They have to memorize the songs, no sheet music is ever used while playing.
It's held at a remote location I think so parents can't interfere.

And then they came home on Friday, unloaded off the bus and then continued to practice on home field. Then it was show time at 7 p.m. Barry and I went to see and we knew already from previous years that it was going to be a good performance. I am truly amazed at how much they learn in such a short time. They have a wonderful band conductor and staff. Barry took tons of pictures, I just have to locate them to blog them.

I return to work tomorrow in a part time status. My goal is to work 4 hours. But if I get tired I know now to leave. Last time I was there was April 10th, I remember that due to having chemo on April 11th. A lot has happened since then. I am truly thankful for the loving/caring support of this community and the people who take the time to read my journey online. As I said when I got out of the hospital, I've come a long way baby! And I intend to go even farther!

I am then off the next day for chemo if my blood counts are OK.

Am looking forward to being among friends...........lots of them.

Tim and the percussion group.