Early arrival at hospital tomorrow

Have to be there at 5 a.m. for surgery at 7:30. Am a bit pooped from days/weeks events and can't wait to hit the bed. Therefore a short post.

My sister will keep the blog up to date for me. Thanks for all your kind words.

Til we meet again. God bless you. Can't wait to get this alien out of my chest.

Sisters are the best... and a son is too.

 

 

Thanks

My party today at my job today was so nice. Full of kindness and support which will carry me over the next few weeks and then some. Not enough time tonight, but I will eventually post some pictures of:

a beautifully decorated pink ribbon cake made by a co-worker's daughter
a lap size afghan that will match my PJ ensemble made by an employee at the college
Ben and Jerry's ice cream and spoon (already being eated by Tim and me)
punch
a handstyled tree decorated with pink ribbons, lights, pink bows. But the best part is the ornaments which are individual notes from my co-worker friends showing their support for me. I read each and every one of them when I got home, shedding a tear here and there due to being touched so deeply.

You couldn't ask for a nicer place to work. And that statement is one that is not made often. I also received cards and an angel for serenity.

A bit pooped now. Looking forward to seeing my sister in a.m. Night and thanks to all who are right beside us everyday.

Blessing of the sick...

Yes, I did get blessed after work. I'll take all the blessings I can get.

Can't wait for this "alien" to be removed. Is bleeding, not heavily, but enough to go through gauze. Today it was even during the day. Had been just at night as I must squirm around in bed.

Tomorrow they're having a party for me at my job. Don't know what's being planned. I was so blessed when I got this job in March. May have taken me 4 years to get a job there, but you know, things work for a reason.

Scab comes off....crap

The scab that was on my incision area of tumor had barely been holding on by a thread. Yesterday that was noticeable when I went to change the gauze bandage. So when I got up this a.m. to undress, the new gauze bandage was completely covered in blood. Not something I like to see, especially in a.m. I'm not a blood type person.
So I took it off to replace it, but as it was being replaced it was dripping blood which made me nervous. Not heavy, but still dripping. Called the Pittsburgh hospital and left message for doctor on call to call me. Within 3 minutes a doctor returned my call. Explained my upcoming surgery and she said to double up on the gauze and to apply pressure on the area. So I did as I was told, layed down on couch. I'm just days aware from having this "alien" thing removed, so close. Don't need any infection. And since this scab has come off, there's a consistent stinging feeling probably due to area being open. Just taking tylenol for it. This doctor said she would notify my surgeon tomorrow about my phone call.

Probably did what I shouldn't have, but did pull up the tomato stakes and plants. So the vegetable part of garden is cleaned out. Still have about 200 bulbs to plant for spring. This will more likely be done by Tim and a buddy as I won't be up to doing it. Kids do like extra bucks in their wallets.

Well, for dessert tonight I went out with a couple of good friends to celebrate my upcoming surgery, Lisa and Joanne. I know the next couple of days will fly.

I have a phone call in to our priest as I would like the Blessing of the Sick before the surgery. It is major surgery and I think I would feel better by having this done.

Make a Difference Day

This a.m. I received a phone call from April who works at the college. She's a friend of mine. Told me to expect a group of college students any minute, that they were coming to rake our yard. It was part of Make a Difference Day, a community helping others in the community. And within 1/2 hr. two vehicles arrived carrying 6 college students. They came with a leaf blower, rakes, tarp and lots of energy. I couldn't believe that this gift was given to us. I've already forwarded the picture to the local newspaper, along to the President of the college. I've said it many times, we are so blessed to be living in God's country. So many friends who I swear would do anything for us. A true blessing.

This p.m. was our local Halloween Parade. Pictures have not been downloaded yet, but let me tell you this. Four boys who play percussion (including Tim) dressed up as Silks (the front dance line of girls). Traditionally this part of the band always comes up with some theme. Each year it gets bettter. The boys had such a great time, along with everyone who had them pose for pictures. Never saw so many happy faces. Just another small town tradition that brings the who town out, even if it was drizzling.

So yes, today was a good day. Counting down until Nov. 1.....when I get the demon taken out of me. And you know me, if I could-I would even ask someone to take pictures of the procedure to blog. Including the demon.

Just so you guys know, my sister will be keeping my blog up to date the weekend she is here.

Just think, in less than a week this will be history! The smaller of the bumps is my port. Forward we will go... Thankful for 2nd opinions.

 

 

 

 

As part of Make a Difference Day, a group of college students surprised us by raking our yard. A community helping a community. Angels on earth.

 

Forward we go

Am so thankful for friends and that my sister will be here for us. And to be able to spend some time with her before the surgery I'm going to be asking for that day off. Otherwise she'll mostly be seeing me in the hospital. Life's too short, have to get the most out of her visit. And it'll be a pleasure to pick her up.

She is amazed at how many friends I have. She shouldn't be. This is God's country after all!

UPDATE: All set for being off on Wednesday. Will be able to pick her up at airport.
I do thank everyone for their offers! More time to see her. And my job is having a "soiree" for me on Tuesday. Life is good.

CT PET SCAN RESULTS PERFECT

Just shows cancer where I already knew it was!

In looking back at my blog, my last CT scan on August 23rd the tumor measured
4.97 x 4.42 cm. Today the size is 6.6 X 4.7 cm. I have had good gut instincts with my body, and I knew that it was growing. That's one reason I went searching for a second opinion. And to get the news that there is no other cancer in my body was such a relief to me. Once again it brought good tears when I made my first calls to family and friends. Next week it will be history.

It was a long day today while waiting for results, but I was glad to be at work. My job keeps me busy, no time to worry which is a blessing.

Am so pleased to know that my sister is coming to represent my family. Had not known this until last night. Up until then I was wasting so much energy on trying to figure out logistically how both Barry and I would be hospitalized at same time, and what to do with Tim. Now everything is in its place. Just as Becky had just told me.

Once again, prayers have been answered.

CT/PET Scans done in Pittsburgh

Well, I think I'm done with all my tests. As I have said after having a job interview, it's out of my hands and into God's hands now. Of all my tests, this one is the most important. I can't remember ever praying as hard as I did today, especially when the PET scan machine was moving down my body every 3 minutes, a total of 7 moves. Each time it was taking pictures of my body. Until I get results of these tests, I am a bit anxious. A lot of "what if's?" have entered my mind today.

Tim scrambled some eggs for me at about 8 p.m. last night, and since I didn't eat anything all day (except for 4 cups of Tang flavored contrast for the tests) I was very hungry. I got into town at 6 p.m. Had Tim meet me at Perkins for dinner. It was nice.

My mind is so tired. Tired of drives into the city, tired of doctors appts. But all of these were muchly needed. I continue to pray for good results. Good results will show just the original tumor.

A very busy couple of weeks. Right now I'm heading to take nice bath and hopefully will hit the bed early tonight. Pooped.

Update on today's trip to Pittsburgh

I left at about 9:30 a.m. and got home at about 4:30 p.m. Another long day. I met with the plastic surgeon who briefly explained what he will be doing during my surgery. He checked out my thighs and skin on the left side under my arm for possible areas to take the skin and use it to put me back together again. Owie..
Told me that the surgery would take 4- 6 hrs, and his part takes about 2 hrs. He actually makes the plastic prosthetic for my sternum area in the operating room. As he took my medical history and heard the cancer had returned in May, he said something to the effect it took me 5 months to come see him. I told him I had never searched for a second opinion, and had been told surgery was not possible. He's confident that I'll be put back together very nicely and that I'll be pleased.

After this appointment I went to Shadyside and had blood work done along with an EKG for pre-op procedures required. I'm losing count on how many doctors I've seen the past few weeks.

Have tentative date of surgery which is Nov. 1, next Thursday. And guess what, Barry's much awaited chemo treatment is following day! I had expected something like this to happen. It will all work out somehow. We have lots of friends that are more than willing to help us. This will be the first time I've not been with Barry during his treatment. But neither of us can afford to wait any longer.
After all these dr. appts. and running around I'm looking forward to "relaxing" in bed with some pain meds! Won't be fun but neither is living with cancer and chemo.

PS Tim's knee is doing great. Still wears the knee thing for support, but doctor says he is fine. Follow up appt. in 10 days. He's made of tough stuff like us.

TOMMORROW I head to Hillman Cancer Center for PET/CT Scans. Now these are tests I am anxious to hear the results of. Have never had PET scan but know about CT scan. Keeping faith that the damn cells have stayed put. And I know you are also praying for me.

Back from city just now and off to take nap. Will update later after I rest my brain.

MRI Brain is PERFECT

No problem with my brain! Thankful for that. Got results this afternoon.

Have been scheduled to see plastic surgeon tomorrow at 11:30 a.m. This phone call just came today for me. Unfortunately, the dr. does surgery on Wednesday which will be the day I go back into the city for tests. Oh well... I'll get to know Pittsburgh.

GO RED SOX

Update on Timster

He's doing quite well considering what happened to him. Has taken it very easy today, which included about a 3 hr. sleep on couch after I cooked tacos for lunch. Has kept the knee thing on continuously, and has not required any pain meds today. He's been icing it periodically during the day. If not on the couch, he's been playing video games with leg straight out. Even slept good last night. Am thankful for that. He knows the discomfort is there but says it's fine.

Hopefully will be seeing dr. tomorrow as a follow up.

As for me, a nice day outside. Cut the lawn and pampered myself to a nice long nap. As Tim got up from his nap, I went to my nap. Perfect timing.

MRI brain is at 7:45 a.m. tomorrow. As Barry once said, he knows there's nothing there! What a jokester.

Tim gets hurt at soccer game tonight...

As Tim kicked the soccer ball at tonight's game, he knew something in his leg definitely came dislocated. Barry could see him raise his arm as he fell to the ground. His knee cap was about 4 inches to the side of where it should be. The team physician, who also was his anatomy teacher last year came right over to him. It was quite obvious to anyone around him what had happened. He told her in lay terms what had happened anyway, and she was cute with him. She said something about "what part of your body got hurt?" And to which he replied the medical term patella.

-------
A dislocated knee cap is when the triangle-shaped bone covering the knee (patella) moves or slides out of place. The problem usually occurs toward the outside of the leg.

A knee x-ray and, sometimes, MRIs should be done to make sure that the dislocation did not cause a bone to break or cartilage to be damaged. If tests show that you have no such damage, your knee will be placed into an immobilizer or cast to prevent you from moving it for several weeks (usually about 3 weeks). After this time, physical therapy is done to help build back your muscle strength and improve the knee's range of motion.

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

Tim said that it was the worst pain in his life, the pain made him want to throw up. But he didn't.. He couldn't believe the site of it. The team physician iced it up and put it into a brace, and will be calling the orthepedic doctor on Monday to set up an appt. She wanted to put the immobilizer on but Tim said the brace was fine. Thank goodness one of the refs had some tylenol that I gave him at 1/2 time. As he sat on the bench I could see his pain since his other foot was tapping away on the ground quickly. It was his right knee cap. He didn't want to leave the game, wanted to stay until the end.

He's been told that the pain will get worse and to continue to use ice and ibuprofen. Since both Barry and I were at the game, I was able to drive Tim home in his car. He's a tough kid, didn't shed a tear unlike me had it happened to me. Definitely won't be playing soccer on Monday, doubtful on the last day which is Thursday. But that's fine. Health is everything.

TGIF

All my scans have been scheduled for next week. MRI of brain will be at local UPMC hospital Monday a.m. The CT/PET scans will be Hillman Cancer Center on Wednesday afternoon in the city. Have talked to surgeons office to say "go ahead" for surgery. They will get back to me.

Tonight I chaperoned for Tim's band to an away football game. This was my first and probably only one I'll do this year. I felt I had to do at least one for Tim. But now I'm back to the need to be and stay healthy for surgery. Tomorrow is my last chemo pill and then I'm off all next week. 2 weeks on the pills, 1 week off. I'm so pleased that I was able to do a whole cycle with the pill. First time.

Heard a good word tonight at the football field. A word that I'm going to have in my head for awhile. "FORWARD" No looking back, just going forward with my life and treatment. As the saying goes, I may have cancer but cancer does not have me! I'm stronger.

A tiring day with lots of output.....

I went to work today and so many people were concerned about my trip to see the doctors. So i filled them in when I could. Still had the ache going up my neck from the night before. Probably stress related. Aleve wasn't helping. All day I couldn't wait to get home and to hop into bed. Even Barry was pooped today from coming with me, and being my driver. Whatever I'm going through, he is going through. Right before leaving work I got message from radiologist who handles the cyberknife equipment and was told that insurance WAS NOT going to cover the procedure after all. Hence, one less decision for source of treatment. Message mentioned that I would be sent for traditional radiation to a dr. I met last week. But you know, this is not an option I'm going to take. Just because radiation only would shrink it, not destroy the tumor. And I may end up with whole where the tumor was radiated, infection could come. Now my decision has been made to be aggressive, go for the surgery. Since hearing the words and explanation of treatment and pain, I thought of my friend JK who has had two mastectomies with reconstruction surgery due to breast cancer. Yes, painful but necessary.

Came home and was in bed within 10 mins. Next thing I knew it was 8:30 and I thought I had overslept in the a.m. Weirdest feeling. Saying ooops, I'm going to be late for work. And then couldn't remember what day it was. Left room only to find Tim also in his bed sleeping. Never heard him come home from soccer. Had to eat late dinner so I could take chemo pills, and now I'm just updating my life as so many people have been concerned. Within the next week I'll be having PT/CT scans in Hillman, MRI of brain at local UPMC hospital. Ruling out that the cancer has not got up and run elsewhere. Surgery would be long day with different types of drs. working on me. In hospital for a week, recovery about 4 weeks at home.

Well, still pooped and headed to bed right after I pop my pills.

Night and thanks to all for ALL your concern.

A tiring day with lots of input

Yesterday we left the house at 10 and got home at 10. A 12 hr. exhausting day. Too tired to even post, I went directly to bed.

2 things we learned: Insurance may not cover the cyberknife, checking into it again
surgeon has suggested surgery to remove the whole damn cancer, which would require reconstructive sugery. A big procedure but doable. Would need a team of drs. in O/R. Is making appts. for me to have new CT/PT scans/MRI of brain to rule out cancer anywhere else. He will consult with all my other doctors about his suggestion. One week hospital stay, 4 weeks recovery. Lot of pain, fill in area with cement prosthetics.

Lots to think about but am leaning to getting rid of it. Being aggressive. no one likes pain, but I sure don't like cancer.

Mentally wiped right now. Off to work.

Off to Pittsburgh to meet some specialists

We'll be leaving shortly for our Pittsburgh trip. Will update you when we get back later today.

Weight this a.m. 132 lbs. Lowest it's been in years. Did have one possible side effect last night from drug which was diarrhea. I speak the truth.

Can't wait for Wednesday to meet cyberknife.

I did what I should have done last Friday. I reported the nurse to the Director of the Cancer Center today about her unprofessional behavior. And within minutes, she called me back. Told me that Dr. G wanted to have me come into the office and examine the tumor and scab area. So I left work and went to see him. He had someone from the Wound Center cover it up with double sided silicone tape, and then taped gauze on it. Just having gauze on it was not a good idea because as it could leak, the gauze would stick to the scab and possibly have it come off. Keeping the scab on is very important. So I'm glad I went. He was not aware of the nurse's comments so I filled him in on it. And I have to thank my buddies for telling me what I should have done last Friday. The best thing about this visit was when the doctor's office from Pittsburgh called to tell me that insurance would cover the cyberknife radiation. News that I needed to hear.

PS Flowers and friendship are priceless especially during hard times. Thank you.
These past couple of weeks have been so difficult. Especially glad for the support I have at my job. As I told my dad tonight, my boss and co-workers have been a wonderful support system on a daily basis. He agrees that it was the best move I could have made!

Insurance will cover CYBERKNIFE procedure!!

A friend of mine onboard The Gateway Clipper, overlooking the Point of Pink in honor of breast cancer month. What a picture..

 

7 days on Xeloda

7 days on Xeloda and no side effects. Yeah. On to the next 7 days and then I will be off for ONE week.

Past couple mornings I've had some spotting show up on my t-shirt as I slept. Coming from incision area. Friday a.m. about 4 small spots, same last night. I did see a nurse yesterday a.m. after I had blood drawn (which was perfect!). Her comments made me a bit upset. Basically she looked at a distance, said "that's cancer" and to "follow up with your doctor, Dr. Brufsky." I felt as if I was being pushed aside. She told me that one usually does not have 2 oncologists due to different opinions. I would still be getting blood draws every week. This comment shocked me, but perhaps I shouldn't be shocked. I did call Dr. Brufsky's office and spoke to his nurse who told me yes, that you can have 2 oncologists. She offered to call Dr. G.'s office for me, I said forget it. If an odor comes from the site, or if there is leakage of puss to go immediately to ER as this could mean infection.
I can't wait to go to Pittsburgh on Wednesday. A chance for 2 different doctors to see what I'm experiencing. And as my boss said to me, if and when you need to be checked out by doctor, go. Don't worry about the job. And I have to agree with her, you can't beat the city for healthcare.

The look of cancer

I just attempted to take a couple snapshots of my tumor using the webcam, but the quality of the picture was not good. But I do want to post a couple of pictures, if only to show people what cancer can look like. Very gross looking in my opinion. I know my body, and this cancer is growing too fast for my liking. It is now hurting the past couple of days, a constant hurt. Not severe but enough for it to be saying "hey, I'm here." And I don't like it at all. You know it was much easier the first time around. I didn't have a constant reminder every day. I continue to be positive, and certainly can't wait for my appt. with the specialists next Wednesday in Pittsburgh. People say we're an inspiration, but many times I don't feel that way.

You know something...I think I deserve a banana split tomorrow!!

PS Proud to announce that Tim scored 2 goals and an assist tonight.

Good news... CYBERKNIFE explained.

I've heard from Dr. Burton's office at Shadyside and I have an appt. with him on Oct. 17 to discuss the radiation procedure cyberknife. They have one of the 6 machines in the country. And after the appt. I go to Hillman Cancer Center to meet with an oncologist surgeon. Fast appts.!!

Did some surfing the net. Here's explanation of procedure. One thing I learned that you will not notice a visual change immediately. May take year or so.

http://www.cyberknifesupport.org/patient_primer.html

3rd day on Xeloda. Thinking positive...

Time for venting

If you are reading this you know that why Barry and I fight for our health is for Tim. And when I see what appears to be injustice towards him, it upsets me. I thought that school soccer was a team sport, where everyone would and could participate equally. But this year has not proven to be the case. If you know me also, when I don't write about something there usually is a reason. I don't like to write or to be negative but finally here I am. To see my son and others on his soccer team sit out practically a whole 40 minute half game tonight is very upsetting while others on his team play the whole game and end up being exhausted. The short time he was privileged to play he put his heart and soul into it as usual, rushing with speed for a chance at a goal. The only thing good about this season is perhaps next season with a change of coach. You know one doesn't complain because the payback is your child will not have chance to play. But after tonight you do have second thoughts. During tonight's game he even spoke to asst. coach, but I think even he was disgusted. Tim's a peacemaker, one not to complain. But does that make it right? One thing is for sure. Going to such soccer games and seeing what I've been seeing, is not fair. Certainly not a positive experience which is what one needs when already fighting a battle with cancer.

Back on Xeloda pills today

Taking 3 500 mgs. in a.m. and 2 500 mgs. after dinner. And will adjust if and when side effects occur. Will have blood work done on Fridays to check everything out. And if any side effects come about, I will change to lower dosage.

Cyberknife for radiation...

http://www.upmccancercenters.com/surgonc/cyberknife.html

A long but productive day for me

Will write more later. Pooped as we just got home.

This is my next possible treatment plan, if insurance pays:

http://www.neuronet.pitt.edu/neuro_oncology/cyberknife.html

One treatment lasts about 1 to 1/12 hrs. and will be done at Shadyside. Dr. there has been faxed all my papers. And then I would just take chemo pills, no IV chemo as that causes the low white counts more than the pills.

Nap time for me now.

UPDATED INFO: 8:30 p.m.************************

Barry and I left for Pittsburgh at 7 a.m. Had to get there at least by 9:15 to fill out insurance paperwork, which basically was just a quickie. The actual appt. was for 10 a.m. Vitals were taken, my blood pressure was high, and then we were put in a room at about 9:50 a.m. After about 45 mins. a resident doctor came in to go over medical history and such. We didn't meet Dr. Brufsky until almost 11:30ish. Sort of lost track of time since we had been in room for such long time. Very nice man, pretty up to date on my medical history and treatments, then and now. I learned at least one thing today from 2 doctors I saw. Both asked me at different appts. about the color of the skin near the tumor, has it always been that color? Dark. I told them that was a question I had asked Dr. Garrow but never got a real answer from him. Their explanation is this: darkness shows that the tumor is attempting to go through the skin. Perhaps he's been trying to protect me from all the truth.

Dr. Brufsky's recommendation is this: meet with their radiation oncologist director right after this meeting to discuss radiation possibilities. 2nd.: stop taking taxotere IV chemo and just take the Xeloda pills. Taxotere is more harmful to the white blood cells than the pills. Yes, the pills have their own side effects that I've seen, but it will be a matter of getting the correct dosage for me. He ended the appt. by giving me his business card with his email address on it. Barry told him that he's made a friend for life with that! Seems very open to receiving questions via email, wants Dr. Garrow to email him soon to go over the consultation.

We then met with the radiation oncologist Dr. Beriwal after going through medical history of radiation treatment in 2005 with Dianne, Collarborative Practice Nurse. Exceptionally friendly nurse with the ability to communicate even by a tender touch to your leg. Barry informed her of his cancer and like so many others was amazed at how well we are handling the situation. Totally amazed at our attitude. One question had to do with sexual intercourse, we both laughed and said basically "that's not in our vocabulary for past 2 years.!" Liked our honesty.
Dr. Beriwal came in and had already gone over my records. Since I already had radiation in part of the area near the new tumor, that type of radiation can not be done again. Once is all you can have it. But there is new advanced focused radiation performed by a robotic type machine that is in only certain hospitals. Called cyber knife. A lot of insurance companies will not pay for it. So that will be our next hurdle. The hospital that actually does this procedure has already been faxed all my paperwork. It will require a couple of visits to Shadyside to prepare for this radiation which takes about 1 1/2 hrs. not like before when you go daily for a minute or two. Heavy dosage aimed directly had tumor, being careful not to hit lungs. As we left the radiation unit, Dianne gave me her business card and I gave her my blog address. A hug followed. My kind of person. Just another angel walking among us. By the way, I saw for the first time the tumor and location. Probably about 5 cm. now. Preparation involves placing some metal markings inside where the tumor is for easy calculation of aiming the machine. Will be doing research on computer for more information.

So today was very productive, tiring also. Didn't leave hospital until about 2 ish, then got a bite to eat in strip district for first time. Home at 4:30 p.m. As my sister would say, lots of input to soak in. And still so many questions to ask.

Didn't go to football game tonight. Both stayed home to rest. Am pleased that we did go for this second opinion. am sure local dr. will be doing weekly blood work for the Pittsburgh doctors involved for me.

No chemo for Barry tomorrow

At 3:45 p.m. today, oncologist office called to cancel Barry's treatment tomorrow. The nurse coordinator had not marked on calendar that the dr. was not in last week and also this week. Nothing like late notice. And due to scheduling/vacation plans at Barry's job he won't be able to have the treatment until November 2. For me, once you have a treatment you sort of look forward to the next one. Not really look forward to it. It just becomes a way of life. On the bright side, Barry will be able to go to my 2nd opinion with Pittsburgh oncologist in morning.

Getting my paperwork in order for appt. in a.m. About 12 pages of information is being asked. But I am truly looking forward to meeting this new doctor and to hear his interpretation of my records.

Anxious for meeting for 2nd opinion

Sorry I haven't been posting. At times my mind just gets so tired. Hard to explain.
A few nights I've been able to see Tim play soccer which has been fun. Hard to remember what actually happened since I last posted.

Barry's next chemo is Friday, and my second opinion is scheduled same morning in Pittsburg. Am hoping that this is a pain free treatment for Barry.I'm sort of anxious for this appt. It would be great if another CT scan was ordered since in my opinion, and others that I've asked, I believe the tumor has grown since the last scan about 6 weeks ago. I'm a postive person, but also realistic. Just through my eyes it appears larger. I can't wait until I meet with the oncologist.

So, one more day and it's my Friday.

The person in charge of booking shows had Wayne sign this program for me. I am so blessed to be working in this positive environment.

 

Chemo side effects: hand/foot syndrome. Gross but real.

 

 

Barry's new bike. I think he deserves it.

 

Tim on his way to homecoming dance in his car. He's growing up too fast.

 

 

 

It was a treat to also see Cheryl Burke from Dancing with the Stars

 

I took lots of pix on this special night.

 

 

 

 

More pix of Wayne and Cheryl

 

 

 

 

Wayne Newton/Cheryl Burke/Autographed program for me...