MORE POSITIVE STEPS UP THE ROAD TO RECOVERY TODAY!!

Jane called us this am and said the usual night time interuptions were present-vs,etc so not much sleep. Her peripheral iv line had croked so the portacath was able to be accessed.Oxygen no longer needed. One jackson pratt drain removed-the one that was to wall suction. The arterial line to her heart removed.Still on iv anitibiotics,regular diet tolerated,no more iv toridol just the oral pain meds. Barry and I scooted in for 2 1/2 hour visit and she made mention that one group of md's said she might go home tomorrow.While we were with her she had a physical therapy session and respiratory therapy-John came by and took her for walk in hall and her room air oxygen levels were ok. Physical therapy will do stairs with her later.Had asked her girlfriend Carol who works at college and lives down the street to print my boarding pass for tomorrow-I never talked to her just left message and did not give her my name but she knew I had been in college store yesterday buying something and got my name from them off payment kind-you could be a private investigator. Thanks Carol for dropping off the boarding pass and goodies for Jane.And YES pictures have been taken of the new WONDER WOMAN SCAR!! she insisted we take some-will post asap. The pictures look better than that alien that was there with the fur on top of it! Mary the ICU nurse picked up gifts last night and Patty also. Well I am off the computer for now and I feel Jane will agree that my mission was accomplished to get her through this emotional roller coaster as a sister to the best of my ability. P.s. Jane not going home tomorrow-? thursday and Dr Christie came by and ordered some celebrex med to help in her pain. Will try and post on her blog when I get home. Adios Pennsylvania!! and hello Massachusetts

" LOUSEY NIGHT AND DAY IN POST OP LAND FOR JANE"

Not a nice night for Jane at all. Said she was awoken constantly for vs check and the arterial line check-no sleep. She had called us around 11;30 to tell us the same. This am I went to get some goodies for each of the 3 ICU shifts-candy,pastries etc. and a special gift for Patty-Jane signed the cards herself. Barry opted to stay home as he had gotten his neulasta shot this am and he is tired and achey today. After Jane talked to her sister Eileen last noc, Eileen had emergency surgery to remove the hernia mesh they had placed month or so ago for the hernia repair. Dad said today she was ok. She is like Jane and never complains. Carol called today to ask about meal set up-will call her later and set up same for when Jane comes home. Jane had couple physical therapy sessions today, foley out and she took a --- on the commode,iv fluids off-just on short antibiotics,pain block line removed-she said it was about 4-5 inches long needle. This am I also visited the people she works with at the college and told them no flowers but did make a surprize suggestion which they will do!!When I saw Jane she seemed short of breath and she said she had been making some noises when she breathed-after listening to her I said u have audible wheezes-make sure u do the blow bottle routine. Shortly after my arrival I was able to meet the main surgeon-Dr Christie-he told her that the tumor was started to do much wrapping and one or two weeks things would have been BAD. Timing was perfect huh? He told her this am CXR shows lower right lung activity-the repair work involved a nerve down by that lower lung area-will monitor closely-right away Respiratory treatments started for the wheezing and by the time I got home she just called and said she is oxygen all the time now-had need last noc but now her numbers have dropped. Also on the plan is a chest cat scan. I asked the Md. if spot was like an effusion and he said yes.Barry said when Jane and he met with the Md mention of this nerve involvement could happen-might take a while to resolve. She knows I plan to go home Wed. and tomorrows CXR,cat scan whenever will determine course of action. People caring for Jane a special thank u-Linda,Troy,DAna,John,Sheila,Alyson,Florestine I feel naked Jane without your cell phone-don't let the hospital know u have it. Tim at play practice and Barry cooked me a shrimp alfredo noodle meal and also bought some ice cream for later. What more could I ask for. Off to call Mary from the ICU to head up to see Jane and get the bags I put together. Adios Wants me to bring the camera tomorrow!!

JANE "TREASURES"NO PAIN TODAY!!

We visited Jane couple hours this afternoon. She was in good spirits as the pain was minimal today-the pain team was able to get a perfect painless recipe together-they increased her oxycodone and added some iv toridol to regime. And guess what-after taking her normal celexa and ativan dose she slept soundly from 9pm to 3am last night and was very thankful for same. Second chest tube removed, ate real food at lunch-what do u think of that dougie? Groin triple line removed so peripheral iv placed without incident. Tomorrow they will probably remove the nerve block line,foley,and iv fluids,and the 2 jackson pratts. While we were there used portable phone for her to talk to Eileen and Dougie and that put a large smile on her face.We were able to help Mary the nurse transfer her OUT OF THE UNIT to a monitored bed on the third floor-private room. She still has an arterial line going right into the heart artery area that had the tumor rapped around it-this line checks for flowing of blood and is heard as swishing sound. Interesting she did mention that she had her nose swabbed for the MRSA bug-i told her probably preventive check since she had been on ventilator-should come back negative. Don't forget Jane u did get the flu and pneumonia shot today. After settling her in, Tim drove us home.Tomorrow she will see how she feels in regards to all her blogging buddies seeing the new "WONDER WOMAN SCAR" She has been told by physical therapy that they will have her get up for 3 meals tomorrow. Well Tim is enjoying his new electric guitar game, I am planning to head home Wednesday, and Barry is watching football. Sorry detailed info but Jane wants all the details so she will understand the journey that she has taken.She said she has looked at the chest incision somewhat by bending chin down. adios and thanks for blogging.

CATCH UP BLOG TIME-CHECK OLD BLOGS FOR ADDED UPDATES!!

Jane wanted to make names mentioned that have helped her thru this journey so take a ride back in surgery time with me for her!!Will post later for today Sunday-we plan to see her when we coordinate time with Tim's plans today.U need to read old blogs and hopefully I can add to! Tim out to Church Jane after he got up hour earlier as he forgot about the time change. Barry and I did some laundry and house cleaning.As u can see I am still blogging and have decided to not go home today-Sunday as Jane still in need of family support-thank u Gene and Mr Duncan for understanding the need!!

A PRODUCTIVE POST OP DAY!!

John the night nurse has passed ativan/celexa information along and thank u. Mary RN with her today.Pain team came when I was there and able to get her a little more comfortable. It must be a nurse writing that kind of title. Tonight the oxygen up the nose gone and jane sat in the chair more than 2 hours. Did not tell her tim was coming with me so she was so happy to see him too. I helped her brush her teeth which felt so good.Was able to grab portable phone and she talked to mom and dad on the cape-their portable phone dead/no lites since 3pm from heavy storm. Adios and yes there is a "god" P.S.Patty the nurse anesthesia friend-THANKS for the chapstick it is so helpful and your visit was perfect explaining to her why her neck and back is killing her more than the chest as she was on the or table for 9 hours-6 of actual surgery and 3 trying to get the block in. She told Jane that her body was in a million positions. And yes Jane we will bring u your own pillow tomorrow am.If possible can u sign name after posting as i am telling her who is posting-thanks Jane wanted me to mention that she kept on repeating "I AM A SURVIVOR,I AM A SURVIVOR" when they had her sit in the chair-it hurt so bad she told Tim and me. She was excited and waiting for the ativan/celexa meds when we left her at 9pm. We did not get lost coming home as we did night prior even with a GPS system.Around this country the Amish use wagons,horses,etc. and find their way just fine!!

ONE CHEST TUBE OUT AND BARRY HOME

A short posting again as barry and I just got home from hospitals.Did get one unit of BLOOD during surgery and TWO UNITS AFTER. He got out at noon and then we scooted to see Jane and they had just removed one chest tube-I was able to do my nursing duties of positioning pillow ,cold cloth to head, and feed her clear liquids.Prior to heading to the hospital had talked to John-Janes nurse who told me her night was lousy with hallucinations-saw bugs crawling all over,felt like rabbit's tooth up her nose from oxygen prong etc.Did mention to John that Jane has so much going through her mind and that as soon as she could get some ativan/celexa meds back in her system as she usually takes she would be feeling better. Back home now as Barry needs his rest and plan to head back around 5;30 to see her. I always tell her blog entries and your support that is given. Thanks

2 GOALS MET TODAY!!

Out the door 4;30 us three amigos-me,barry,and tim. Just home dos amigos-tim and me.
Will blog more tomorrow cause as the saying goes"too tired to ----Blog i mean. Jane successfully off the breathing machine lunchtime and tolerated same-pain less than lunchtime.Barry tolerated #10 chemo treatment and I was able to make sure things went smooth like Jane does each treatment. Jane says "hi to all that touch her life" Sweet dreams to all!!Rob RN-was with her first night and explained to me when i saw him next day that both her hands had been tied down because she was restless and the breathing tube could not slip out-she remembers wondering why she had been tied down and did not like the feeling when she was able to speak to me after off vent.Barry up to room around 4:30pm-10th floor and was able to sit up in bed at this time-I sent Tim to find Barry cold soda. After a quick drink and realizing Barry would fall back to sleep and was comfortable we were off to see Jane and left phone near Barry so I could have the two talk later. Amanda-Rn-Jane felt so safe with u-u reminded me of myself when I was a younger nurse-Thanks. Nasty ventilator feeling Jane said-had written down when on-I'm a gagger and yes Jane I saved your paper u wrote this on. We left Jane with the suction catheter in her hand to catch the spit!!

"HOPE"-Pure and Simple was important today!!!

Last night Jane had shown me some gifts received and have chosen to label today's last entry from one of the books she received. Patty once again is a true friend and came to talk to us around 5pm and escorted us up to the Intensive Care Unit waiting area. We were able to visit with Jane earlier than expected as Patty knew of Barry's busy day tomorrow. Obviously at this time Jane is need of the multiple of tubes we witnessed-respirator,2 chest tubes,right groin central line,nerve block line,2 jackson prat drainage bulbs,foley,ekg monitor,large chest dressing, etc. When she was able to speak wanted me to talk about the real deal in her blog.Also dressing from grafting sites. It was a short visit as they were still getting her settled for a safe and comfortable night.Thank u Nurses Jess #1 and Jess #2.respiratory therapy etc. After this visit the best news of the day was given to us by one of the thoracic surgeons that operated on her-Lady Physician-Dr. Trainor. "WE GOT IT" Music to our ears. sounded like a Red Sox win to me. Off for now and a verse in book reads-God makes healthy what is sick,right what is wrong,and straight what is crooked!! Off to bed soon as we leave 4;45 am for Barry's chemo treatment at a different hospital. Thanks for all your well wishes and thank u Jane for letting me use about 500 cell phone minutes!!

ALIEN GONE AS OF 4PM

The plastic surgeon called Barry around 4 and said Jane heading to recovery room.Still have not talked to chest surgeon yet. And the people next to Barry told him he was "snoring" We can't wait to see her.Patty once again went beyond her call of duty and came down to see us around 4;45pm and escorted us to see Jane-Got to see her sooner with her help!! Thank u Patty!!

SURGERY UPDATE 1;30pm

Patty called and told us it was time for the PLASTIC SURGEON's EXPERTISE to come into play and would take couple hours. I think Barry is finally asleep-a family member sitting at table next to his recliner keeps on getting up and down and hitting his feet and he does not move!!yeh!

HEADING TO SURGERY

Jane went into surgery around 9:45 am. Barry never slept and Patty had called him around 10:00 to tell him the nerve block was very difficult and that was the delay.Jane's past radiation caused some entry issues of the nerve block needle. According to Patty-her nurse anesthestist friend from 7 to almost 10-the nerve block was in process!!

THE TEAM PREPARES TO MEET"MR ALIEN"

And yes we were up at 3;15 am and out the door shortly thereafter. Jane said she slept ok last night. Signed in at 5am and Barry and I were with her until 7am when they were going to start her nerve block. Families are assigned beepers-pt.numbers-a large screen displays when in surgery and when surgery has started. Sincy Barry couldn't sleep last night with his liver discomfort-have sent him to car and try and sleep.Have been told will be a long day and was able to meet pain team,nurses,her friend Patty who gives the anesthesia juice,orthopedic cancer md,plastic surgeon, and chest surgeon. Barry and I feel very comfortable she is in hands of "SPECIAL PROFESSIONAL ANGELS" Plan today is Intensive Care after etc.As of this time 8;45 am Jane has not gone into actual OR room so hang tight. Upon leaving Jane,Patty promised to give her that versid-twilight medicine and took Barry's cell phone number and wrote it on her pants leg. IN THIS PREOPERATIVE TIME-Cristin-nurse,Daniel-anesthesia,Alon-pain control team member,Bendavid,Dr.Goodman-orthopedic oncologist,Dr.Schwartz-plastic surgeon,Dr.Christie-major surgeon-Thanks for all your help Also waiting area-Suzanne and Ellie-soothing voices to ease stressful families worries!!

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...

 

 

 

 

What a great day...Wayne Newton tonight...

Wayne Newton is performing at our college tonight. He arrived in the a.m. and his dance partner Cheryl Burke from Dancing with the Stars will also be on campus. Since he is still in the running on the tv show, they need to continue to practice for next week's show while he's on tour. The college has allowed his access to the dance studio.

From the beginning of the day today, the conversation was Wayne Newton in our office. For a change, I wore something different and told others I was dressed up just in case I saw Wayne today. We had so much fun today with the excitement on campus. All the buzz made for a great day.

At one point, the college President came up to our office. I mentioned to him that if he should see Wayne, just tell him I said hi. He asked if I was going to the show and I said no since my son had a soccer game. By the end of they day, a day that began with me not really into seeing Wayne (but wanting to see Cheryl the dance partner more), I truly was disappointed that I had not bought a ticket. At about 4 p.m., someone comes up behind me as I was just finishing up for the day. Guess who?
The President of the college hands me a ticket and says "if your son's game gets rained out, here's a ticket for you." Can you believe that? I had to hug him. What a great day!

As I have said recently, after having bad days...it sure does feel good to have a good day. No blood tests this week, no chemo this week. Just so nice to feel good. And such a positive work environment. Just what one needs for support. I'm truly blessed.

Well, I have to go wash my "hair" for Wayne. Will tell you all about it tomorrow.

...daddy don't you walk so fast.....

http://www.westminster.edu/student/orgs/radio/release.cfm?id=406

UPDATED 10:45 p.m.

What a performance! Wayne performed for 2 hrs. straight. Never knew that he also plays many instruments. It truly was a memorable evening. A special treat was also being able to see Cheryl his dancing partner. She was in the audience about 4 rows from the stage. She ended up going on stage for an introduction and then they did a little dance to show what's coming up next week on the show. The performance tonight was taped by BBC and for company involved with Dancing with the Stars. Look for clipping perhaps on Monday's show about the college. Not only did the President give me the ticket to the show, he and his wife Jean sat directly next to me. Days like today make me forget the bad days.

Thanks! for a great day.

Barry's CT scans

Heard from Dr's office today. CT scans show no change/stable. So that is good news as far as cancer goes! Wanted us to know since we won't see them until Oct. 5th.

About 3 of my fingertips blistered to the point of being able to be peeled off. About an inch of snake skin on each came off. Still no traction to grab things, but I do think the numbness is fading away. No complaints today. A good day.

Fingertips blister

My fingertips that have been numb and sort of swollen (no fingerprint markings) are actually blistering. Just noticed that at work this p.m. Looked at them and they were turning whitish. Looked closer and could see it was becoming a blister. Now they are cracking and opening up. Strange. Hard to handle money at work, or even sort through paperwork since I have no real feelings in the tips.

In the p.m. I started to get headache. Went home and should have taken aspirin, but instead hit the bed instead. Mistake. After about an hr. I was up and really needed an excedrin.

Tim's growing up too fast. Decided on going to homecoming this Saturday. And tonight he's ordered the flowers himself and has gone tie shopping without me. But that's fine, I have a chance just to sit down.

Barry's been feeling aches the past couple of weeks. Enough that he's been taking advil. Am just praying aches mean shrinkage.

This weekend

Last night, at Tim's suggestion, the 3 of us went to see the Varsity Girls soccer team play. Called it a family night. At times we weren't actually sitting together, but at least we were in the same stadium. It was a very nice evening, a good idea on Tim's behalf. And the girls won their game. Another chance just to go and socialize. Always a good thing.

Today I vacuumed for first time in a few weeks. At least the first floor. Walking is a bit more comfortable for me. Not in stocking feet yet though. Pain not as bad.
As for my hands, the finger tips are what is being effected now. Strange feeling of being all numb and itchy, and when you look at them they appear to be swollen. Especially since there are no lines appearing on the tips. On both hands.

I also "spring cleaned" the living room windows this afternoon. They look so good.
Used a recipe that BJ game me: warm water/white vinegar/couple squirts of joy and microfiber towels. Since they were so dirty to start with, I did first round cleaning with windex and paper towels to save on the towels. Lots more to do, but a start.

Tried to take a nap but was unable to.

One step at a time...

HAPPY ANNIVERSARY MOM & DAD

I may not be current in sending out greeting cards, but who else gets to have their anniversary put on the internet! Happy Anniversary, MOM and DAD.

WE LOVE YOU LOTS...

PS Posting early so I can sleep in late.

CT Scans for Barry today

It took Barry almost 4 hrs. to get to his appt. in Pittsburgh today for CT scans. Of course he was late, but I had his Dr's office notify them of the delay. All due to an accident. Plus to make matters worse, the same bridge was closed when he was trying to leave the city. Heard on the news tonight it was closed for Maintenance! No signs telling you that it's closed, even had cars backing out of the tunnel. So Barry had an enjoyable trip! Stress that was not needed.

His next chemo is in 2 weeks.

Had a couple of nice surprises at my job today. Someone had left a nice vanilla/grapefruit scented candle on my desk. And later a teacher delivered a beautiful mum plant to me. Asked from who, he said anonymous. So it was a pretty nice day for me. I can certainly tell you that I work with a great group of people. When I worked at another job, no one even asked how I was feeling. That was about 2 years ago. Was once told that it could have been due to the fact they didn't know what to say. Who knows. I just know that the college has been so kind to me.

"Good to go"

I was one of 10 people from the College who was invited to attend a benefit dinner sponsored by YMCA. It's an annual event with the theme Salute to Courage. The young person's name is Taylor who is in remission for cancer. I remember reading about her perhaps last year when she was chosen to be in the Homecoming court at a local high school. She's just a teenager who has learned so much in such a short time. She went to the dance bald, and preferred baldness to wearing a head covering. My kind of person. She had a motto from the first time she learned she had cancer about 1 1/2 years ago: "GOOD TO GO." What a positive saying.

After dinner, they presented a slide show of her and her family/friends. Eventually she spoke. A bright young teenager, a postive role model. I could not resist to go up to her and to hug her. As I approached her, her mother could tell where I was coming from. She immediately hugged me. It was a very emotional evening, but an evening I had wanted to attend since the invitation was offered to me. I then introduced myself to Taylor and we hugged. I felt so honored to be there, and to meet another positive person. We may have cried as we spoke, but heck we've been through a lot. She even asked for my name and email address. I am so looking forward to communicating with her. Tonight she was my angel! Even at 16 years old she knew about neuropathy. A 16 year old should not even be aware of such terms.

We agreed. Cancer sucks..

Hopefully you can use this link to read an article about Taylor:

http://www.news-tribune.net/features/cnhinshealth_story_138110231.html


PS. Blood tests for me today are OK. Just have stopped chemo pills. Neuopathy is still issue with feet and hands.

Have to believe that pain is good

A new day with new symptoms. Just have to believe that pain is good, chemo is killing the cancer cells. Just to walk is painful, may try wearing my slippers at work. Hard to describe the pain/discomfort. Natural crease in my foot feels so deep with pain from neuropathy. Don't mind my fingers as much. Plus back to the fatigue. Got home from work and eventually just went to bed for awhile. Good not to have any weight on my feet. Have been taking aleve for it. Continue to have such a terrible taste in my mouth. Even brushing my teeth doesn't make it go away. Worst taste ever.

Am very thankful for my friend Ann who also takes chemo pill I do. She has been a great help in just knowing that I'm not the only person going through this discomfort. And she says every cycle is different. She is the person who said slippers work good for her.

Night.

Neuropathy moves to feet now

Now the bottom of my feet are showing signs of the tingling/redness. By the end of the day both feet are red on the bottom. And if I was to walk just in my socks, that hurts. Did take some aleve that seems to have relieved some of the discomfort.
Now I know what Barry has been through.

I had thought that you were to avoid hot baths/hot anything because the area would be numb and you may not feel the hotness. Well, I think I ruled that out this a.m. as I was taking a shower. Just the water hitting my fingers hurt, and it wasn't that hot. Boy, I'm going to miss my hot baths in the evening. They even recommend putting your hands and feet on ice several times during the day.

After I attended a 2 hr. training program for church this p.m., I took my 2 hr. nap. And that wasn't long enough. The fatigue has set back in, just as quickly as it had left. This week Tim has 2 away soccer games which I won't be going to due to work schedule, so that will allow me just to stay put at home. Put my feet up to rest.

That's it for now. PS. My dad got good news today. His vision improved enough to watch a whole tv show, plus he was able to take a walk with a cane (but only because someone went with him). Not able to do that himself. Keep up the good work, DAD.
And yes, used the computer for first time in over a month to send a hello email out.

Cycle 2/XELODA first day of the chemo pills

Was a bit restless sleeping last night. But that is usually the case right after the chemo.

This a.m. I picked up the mums I had bought through the band and then had my eyes checked. And was pleased to find out that since last time (1 1/2 years ago) they were about the same, only difference was due to aging process. No need to change anything on existing glasses at this time.

During the afternoon we headed to local apple festival where I treated myself to elephant ears and apple dumping smothered with vanilla ice cream. Oh yes, we did buy some apples also.

Felt good today, took my first day of the chemo pills. It was today that I felt and saw for the first time the known side effects from the drugs on my fingers. Tips are red with feeling of tingling. Weird feeling. But am continuing to apply the udder cream on them and my soles of my feet, which also could become the same.

Here's some information on what I'm experiencing. Lots to read but worth it.

*******************************************************


What is peripheral neuropathy and how is it related to chemotherapy?

The body's nervous system is divided into two major systems; the central nervous system and the peripheral nervous system. The peripheral nervous system is also divided into two major parts, the somatic nervous system and the autonomic nervous system. The somatic nervous system consists of peripheral nerve fibers that send sensory information to the central nervous system and motor nerve fibers that send signals to skeletal muscle. The autonomic nervous system controls smooth muscle of the viscera (internal organs) and glands.

Peripheral neuropathy results from some type of damage to the peripheral nerves. Certain chemotherapy drugs can cause peripheral neuropathy such as vinca alkaloids (vincristine), cisplatin, paclitaxel, and the podophyllotoxins (etoposide and tenoposide).
Other drugs used to treat cancer such as thalidomide and interferon also can cause peripheral neuropathy.

Individuals at greatest risk of peripheral neuropathy associated with chemotherapy are those with preexisting peripheral neuropathy from conditions such as:

Diabetes
Alcoholism
Severe malnutrition
Previous chemotherapy
Symptoms of peripheral neuropathy:

Numbness, tingling (feeling of pins and needles) of hands and/or feet
Burning of hands and/or feet
Numbness around mouth
Constipation
Loss of sensation to touch
Loss of positional sense (knowing where a body part is without looking).
Weakness and leg cramping or any pain in hands and/or feet
Difficulty picking things up or buttoning clothes
Areas affected by neuropathy:

Fingers and toes (most common)
This may move gradually upward in a stocking-glove type fashion.
Bowel.
May cause or worsen constipation
May lead to conditions such as ileus (intestinal blockage).
Other; face, back, chest.
Although some of the signs of neuropathy may appear suddenly, this change in sensation usually builds gradually and can worsen with each additional dose of chemotherapy. It is usually strongest right after a chemo treatment, but tends to lessen just before the next treatment. The symptoms usually peak about 3-5 months after the last dose of treatment is taken. The abnormal sensations may disappear completely, or lessen only partially; they may also involve less of the body. If neuropathy diminishes, it is a gradual process usually requiring several months. However, in some cases it may be irreversible and never diminish in intensity or the area of the body affected.

Things you can do (the patient) to minimize the effects of chemotherapy-based neuropathy:

Various techniques have been tried by patients and recommended by physicians to prevent, lessen the severity or treat chemotherapy side effects such as peripheral neuropathy. There is no "one-size-fits-all" regimen that works for everyone. Much of the treatment is based on trial and error, and finding what combination of interventions works for the individual.

Report any unusual feeling you may have to your health care professional. Let them know if you are experiencing any of the above symptoms, so they can assess.
Follow instructions regarding rest and delays in treatment.
Be active in decisions regarding treatment versus quality of life.
Protection and Safety against Peripheral Neuropathy:

Protect areas where sensation is decreased (example; do not walk around without foot wear). Wear thick socks and soft soled shoes.
Extreme temperature changes may worsen symptoms.
Wear warm clothing in cold weather. Protect feet and hands from extreme cold.
Use care when washing dishes or taking a bath or shower do not let the water get too hot.
Use potholders when cooking.
Use gloves when washing dishes, gardening.
Inspect skin for cuts, abrasions, burns daily, especially arms, legs, toes and fingers.
Simple Comfort Measures:

Massage
Flexible splints
Lotions and creams
Measures to relieve constipation induced by neuropathy:

Eat foods high in fiber like fruits (pears, prunes), cereals, and vegetables.
Drink two to three liters of non-alcoholic fluids (water, juices) each day; unless you are told otherwise by your doctor.
Exercise twenty to thirty minutes most days of the week, as tolerated, and if okay with your doctor. A lot of patients find that walking for exercise is convenient and easy to do.
If you have been prescribed a "bowel regimen," make sure you follow it exactly.
Other tips to combat or minimize chemo-based neuropathy:

Some patients have found techniques such as deep breathing, relaxation and guided imagery helpful particularly to help with pain associated with neuropathy.

Drugs/treatment changes or therapies that may be prescribed by your doctor:

Chemotherapy treatments may need to be interrupted or the dose adjusted to prevent worsening of this side effect.
Use of vitamins particularly those in the B-complex family.
Control of neuropathic pain:

Pain relievers (analgesics)
Antidepressant (such as amitriptyline)
Antiseizure medications (such as gabapentin)
Therapies:

Physical therapy may help with strengthening of muscles that are weak. Usual exercises are range of motion, stretching and massage. Also can recommend assistive devices such as orthotic braces, canes, and appropriate splints.
Occupational therapy may also be of help with assistive devices for activities of daily living.
Therapies such as biofeedback, acupuncture, or transcutaneous nerve stimulation (TENS) may also be recommended/prescribed in severe cases.
When to call your doctor or health care professional:

Notify your health care professional if you are experiencing the above symptoms.
Unrelieved pain.
Constipation despite laxative use.
Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

Finger tips showing side effects of chemo. Tingling feeling/redness. Weird sensation. What hair I have is slowly coming out (again).

 

Cycle 2 TAXOTERE today/XELODA starts tomorrow

Had second cycle of taxotere this a.m. after meeting with oncologist. Couple things have been changed with this cycle. I did not receive any benadryl or pepcid in pre meds. After the nurse walked away and I saw the chemo already hooked up I guestioned her. Said, "did I get benadryl today cause I certainly am not sleepy as usual!?" Nope she said, wasn't on this order today. I did get usual decadron and kytrol for pre meds. I will not be taking the decadron pills like I did last cycle on the 2 days following chemo. The doctor believes that is what made me hit rockbottom the beginning of the first week. And I don't want that to happen again, a very bad low. I'm also reducing the xeloda to be only 2 pills (500 mg each) after breakfast and dinner. So therefore reducing dosage by 1000 mg. Hoping this will save my white blood cell count this cycle.

I tried to sleep a little before football game but only got 1 hr in. My goal was to see Tim play in the band as this was my first time seeing him march in a football game this year. Don't tell him but I was so proud and happy to be there that I shed some tears as I watched him play. Am so proud of him, and heck so proud of me to even be able to watch him within just a few hours of receiving chemo. Tears of joy.

The rain and lightning came right after 1/2 time. Perfect timing. Our team ended up winning when game was called by 37-0. The kids all ran into the school when it started to rain (except the tough football players).

A long day, but a productive day. Came to find out at my appt. that my next chemo would have been same day as Barry's chemo in Pittsburgh, and also my 2nd appt. with oncologist in city. No problem though, am delaying treatment until after the consultation rather than before. This way I'll be in the good frame of mind as it will be end of the 3rd week and no chemo pills! Yeah.

Time to sign off.

PS It was such a nice night at game, seeing all good friends there. Who cares about the rain. And I only wish I had more time to talk to you JK at the game. That was a real treat seeing you as I have not in a long time. God bless all of you for your hugs tonight.

Blood tests perfect!

Need I say anything more. I was very glad to know that the counts had increased, all is OK. I have my appt. with oncologist in a.m. followed by chemo. Round 2 of this chemo routine. At least now I know what I can expect.

I had two people tell me at work today that I had the twinkle back in my eyes. What a nice comment. Yes, it has been a good 4 days at work this week. Can't take them away from me. I actually said that it feels good to feel good. I'm not perfect, but far from what I was a week ago.

Back to work and a good day

I went back to work today and as the title says: it was a good day. I don't even think I yawned at all. My co-workers are so kind and caring (but that's just the way it is!). My boss even suggested partial work days. And as the day progressed I was again asked how I was doing. I said that it felt good to be with people/to be working where my mind is not on me. Am very thankful for the positive energy that surrounds me.


It was a busy and productive day for me. Even stayed an hr. late just to catch up on things that needed to be done.

Fatigue-trying to fight with lots of sleep

Haven't felt like bloggin' but I have to make myself do it, if only to help me to keep track of how I'm doing.

For the first time in a couple of years, I called out sick Thursday and Friday due to low white blood cells. Other times I've not been to work were due to chemo treatments. Pretty good for someone dealing with cancer.

About the only thing I did on Friday, after pushing Tim out the door to school with sore throat and stuffy nose (shame on me), was to sleep most of the day.

Then comes Saturday. I did go see Tim play soccer. It was worth it as he scored a goal. Team lost, but that's OK with me. I sat in an area of bleachers all by myself. Briefly explained to people why I was keeping to myself. Lunch was pizza at the stadium. Tim rested after the game as he still wasn't feeling good. Then he went to an away football game with the band. Found out it poured all the time, kids stayed in the bus until 1/2 time when they got out and did their routine. I think they left after the 3rd period. Am so glad I didn't go to that game. Both Barry and I stayed home once again.

Before dinner Barry treated me to DQ for a banana split. Yes, I'm going to become one. That is one thing when I eat it, it tastes the same. Most other things have no or different taste. Then we did a take out order from a restaurant as we didn't want to risk me catching anything. And to keep honest with my blog postings, I am posting the following. As soon as I got in the door, the bathroom called me. And I spent many trips there with the end result of me taking immodium AD. Eventually took a bath, went downstairs to finally spend time with Barry, and to lay down on the couch. I just couldn't get warmed up. Just as a precaution, I took my temp and it was fine. Quickly said good nite to Barry and went to bed. I couldn't stop shivering, even had my winter jammies on along with a warm turban hat to cover my head. Put comforter also on top of the bed. For about 45 minutes I could not get warmed up even while in the fetal position. But then I did, and put my regular jammies on. Not a good night for me. Tim got home at about 11:30 p.m. as I was still in bed.

This morning, the "boys" went to see the Buffalo Bills play. They lost with zero seconds in the game when the other team got a field goal. What a shame. But I just heard from Tim that they had pizza at our friend's house who plays for the Bills. Can't beat that!

After saying goodbye to them at 7:45 a.m. this morning, I went back to bed. Do you know what time I woke up? 1 p.m. just in time for the game! And even with all that sleep, I yawned during the day. This treatment is wearing me down, but I will soon be back in control. If I've learned anything it's this. If you're tired, rest. Do what your body is asking you to do. My accomplishments today were buying a newspaper at gas station and doing a couple loads of laundry/changed Tim's sheets.

Update on noticeable side effects: no eyebrows
no bottom eyelashes
no nose hairs

Funny how when you are missing these, you do notice the difference. Every blink I blink I feel. And when I have cried, it's actually uncomfortable. Seems that the tears have no place to go. Very weird. And runny noses run easy.

Weight is 134 lbs. this a.m.

As for work tomorrow, I'm going to play it be ear. I need to update the cancer center on how I was feeling this weekend. And to ask how I would know if/when my white blood count increases. Can't take risks.

Low white blood count....time to stop new chemo

This a.m.'s weekly blood count showed that my white blood count was low, requiring me to stop taking the XELODA chemo pills immediately until it gets back to normal and then the dosage will be adjusted. This is the first time that my white blood count has ever been low. Dropped quite a bit since last Thursday. This means that I have to be extremely careful of germs, stay out of crowds and not be at all close to someone that is not feeling well. I am prime target for infection. The nurse practitioner also checked out my throat/gland area and did a quick exam on me. Didn't notice anything wrong. I just know that the gland area is sore, and there is lump when I swallow. And you know something, I've been right in the past.

After finding this out, my next appt. was to see the dentist to have my tooth x-rayed that had been hurting me. And yes, the x-ray does show a nice black spot. For some reason, the dentist was unsure what it is exactly. Said he would need to go in to see what it is, and perhaps would need to do a root canal. Well, unfortunately for me, no dental work can be done on me since my count is low. He did prescribe a strong antibiotic for me to take in the meantime. So for now my tooth is on hold.

I got home from both of these appts. at 10:30 a.m. and was extremely pooped. God is really testing me. So for the first time, I actually had to call in sick! And after talking with another oncologist this p.m., I will also not be working tomorrow. Too risky right now, don't need to land in hospital. She said that the numbers will come up in a few days especially by stopping the chemo pills. And handling cash at this stage in the game is a bad idea. (I work with cash).

So today I spent about 4 total hours in bed sleeping. Felt good. Have taken an antibiotic pill and hopefully will feel results soon. And tomorrow will be another day of needed rest for me.

We were planning on going to see Buffalo Bills play on Sunday. Barry and Tim will be going, but I will be staying home. Can't be in crowds, but Barry needs to get away and have some fun. My fun will be to rest up in a quiet house.

PS GOOD NEWS**************************

My dad comes home from rehab tomorrow!!! Yeah..


PSS MORE GOOD NEWS********************************

Just heard through the grape vine that Tim got elected TREASURER of his JR. CLASS!
Way to go, Tim. With everything going on in our family life, we needed to hear some more good news!!!!!!

Fairly good day

I actually had a fairly good day at work today. Compared to past days, felt pretty good. Still have what feels like a swollen gland and a lumpy feeling when I swallow. Back of my throat does appear to be a bit red. And one of my teeth is really hurting. Think I'm going to have to make an appt. with dentist for that. I also don't know why, but I continue to get nosebleeds when I blow my nose. They stop within a few minutes, just a nuisance though. But with these minor things, I still call today a pretty good day. Even stayed after work for an hour to help my boss with reports that needed to be printed. No nap for me today, but that's OK.

My treat today was when Tim came home from soccer practice. Asked if I wanted Subway for dinner. Of course I said yes, and he even offered to pick it up for us! I just love that he has his license. Comes in very handy! after a long day at work.

I talk with my dad every night. His blood counts are slowly getting higher. Sounds better each day. Still weak but is getting stronger every day. I also talk with my mom. I tell her how great she's been doing. Tonight when I called to speak to her, I could hear her in background crying about it being such a long day. My sister put her on the phone with me and I immediately was able to change her thoughts. I told her that my day was so much better today. And of course, I mentioned that she has certainly put on many miles these past few days and that I was very proud of her. She perked right up, even if it's only for a few moments. The next few days she will be able to stay put on the Cape and go to the Sr. citizen center which she hasn't been to this week. She does enjoy that. One thing with alzheimers, if you have a bad day it will disappear quickly from your memory anyway. I'm thankful for each and every conversation I have with her as she still knows me. Always asks me how I'm doing, along with Barry and Tim by name. I'm physicallly unable to be with her but am there totally in spirit.

Rest when you can

I get home from work at 4:45 p.m. and by 5:30 p.m. I'm in my jammies and in my bed. I eventually waked up at 7:45 p.m. Even Tim took a nap about the same time as he had a headache. I fall asleep so quickly and effortless, a long day at work.

I've been asked if perhaps a medical leave would be beneficial for me, less stress and more time to rest while going through such treatment. A question I have yet to find an answer to. For now I continue on with the path I'm on, at least for now.

I wish I could borrow an energy drink from Tim that would really get me up and energized. I tasted one yesterday. Yuck.

Update on my dad

My dad ended up with 2 different parasite infections probably caused by a deer tick. His blood counts were so low, one if them only read ONE. That was bad. After a week in the hospital and receiving blood transfusions, he was moved to a rehab center a couple of towns away. My sister had researched about 3 facitilies to find the best one for him. And they lucked out with a bed becoming available. He is in a single room on the first floor. He is not allowed out of the wheelchair due to safety concerns. When he leaves his room he wears a surgical mask to prevent him from getting an infection. His immune system is weak. His physical therapy consists of about 30 minutes of attempting to pick items up off the floor, trying to walk over a wire. As he told me, his vision has not come back totally. Seems to come and go. Dizzy still/shaky when he stands. Physically he sure does need help, but mentally he's his good old self. I've been callin him daily which he does enjoy. Even though every sentence I speak starts or ends with a yawn. But he's my dad and understands!

As for my mom, considering the past week and everything that has been happening out of the normal routine, she's doing GREAT. And I tell her that everytime I call her. She has no idea on what is going on. But on the phone is as pleasant as can be to me. Always asks me "how are you feeling Jane?" Yes, she still knows our names which is a blessing. My sister maneuvered my mom for the past 10 days, from Cape Cod to her own home off the Cape as they say. Almost taking each day as it came as she works as a nurse. Couple of days my mom spent at my brother's house and she will do the same this week. A difficult time especially with an alzheimer patient things should be calm and routine. But she was able to attend her senior center activities for her usual 2 days. Just lots of chauffering and organizing. My sister did end up boarding their dalmatian. We're not sure how long my dad will be in rehab, may be for weeks. I think my sister is working with her job for some time off to care for my mom. Having something like this happen to your parent(s) sure can take a toll out of you and them. I ask for continued prayers for them.

So you see, we're all going through changes. As my mother once said to me, it's the aging process. It's no wonder why my brain is in overload lately. But we have to keep going forward. May not be walking fast, but at least I'm going in the right direction.

Tired of being tired

As you've noticed my last posting was about 1 week ago. And that was the beginning of a very long week of fatigue and changes to my outlook. The next day was even more exhausting to me, and to continue to be honest tears were shed for a couple of days. I had been given decadron/steroid on the Friday I had chemo, and I took decadron pills the following two days afterwards. So come Monday/Tuesday I hit what I call "rock bottom" in the energy level and emotional level. For what I think was the first time in my life, I had to reach out to a friend. And within minutes Lisa was at my door on Tuesday when I got home from my job. Not only did she show up, but another bosum buddy (just out of the blue) Tina stopped by with some food. After I got some food and my medication into my system Tina left and brought back BJ. I was the lowest of lows those hours. And after talking to my oncologist, he has adjusted some meds that I take. He told me this: I'm hitting you good with these chemo drugs. And also the decadron does a job on you.


I continue to be fatigued, and while at work I make myself walk away and take a much needed break during the day. If only to go for a walk in town, or sit and catch my breath in my truck. This will be my second week on the chemo pills and I am so looking forward to next week. NO CHEMO PILLS for a week. My next chemo by IV is Sept. 14.

On Friday my sense of taste basically disappeared. Everything tastes like cardboard.
Call it trench mouth. Ate a nice juicy burger Saturday but couldn't even tell it. Sweets taste the best though. An ear of corn tasted OK due to its sweetness. My body/bones have been aching this weekend. About the only thing I did yesterday was to watch Tim play a soccer game, which he assisted with a goal. Both weekend days I got up late. And today after being up for only about a few hrs., made BLT's for lunch and then went to bed for about 4 hrs. When people ask me how I'm doing, the only word that comes to mind is "fatigued." More than just tired. But in reading over my medical literature, this is what is said: rest rest rest when your body is telling you to.

Yes, tomorrow is a holiday but not for me. A work day. And of all times in my life, I sure could enjoy another day off. But....that's life.

Barry's next chemo is Sept 28 which is also the same day as my second opionion with an oncologist at MaGee Womens in Pittsburgh. I can kill 2 birds with one stone.