Family is the best medicine

We got back from Cape Cod Thursday p.m. Barry drove the whole way back which was about 10 1/2 hrs. while Tim and I dozed. I think I was the most comfortable with my nice bed that I had made in the backseat, which was even better than the trip up there. Dad had given me a nice goose down comforter which made for an extra soft/warm bed. (You see, I commented how much I liked the comforter and he ended up giving it to me. Next time I have to remember that and tell him how much I like something even bigger and more expensive! I had not expected to be as comfortable as I was on this trip. Am thankful I was as cozy as I was. It was especially nice because Barry wasn't making me stay awake the whole trip, I was able to lay down as needed.

I do realize that I didn't post while on the Cape. No good reason, just wasn't on my to do list. It was a nice trip, able to see all of Barry's family the day after Christmas. Tim and his cousins had the job of moving a cut up tree and branches that they had taken down after a bad storm. Actually did a fast job in doing so, probably cause they just chit chatted as they moved all the tree. It had been a long time since we had seen all his family together. It's hard to accomplish that since now all the kids go to college and/or have jobs. Am very glad they made the effort to come see us. We even got to out to dinner with them, all 11 of us. Thanks.

Christmas Day was spent at my brother's house where he traditionally has this dinner with so much food including prime rib and lots of desserts. I am not sure how many people were there. It was Barry's first time being able to go which made it even more special. Tim was able to spend some time with his cousin there as well. Stephanie was on winter break from college. Another person we had not seen in a long time. Doug lived up to his reputation and prepared a tasty meal for all. Since he is a chef and owner of a restaurant, he loves to cook even on his day off. Does it so calmly while even socializing with his guests. I could never do that.

We stayed at my parents' home while on vacation. Have never had bad accomodations there. We were able to enjoy some pizza and fried seafood during our stay. Most of the local seafood restaurants we truly enjoy are closed this time of year since they are seasonal.

Dad: for your reading only not to be shown to mom.

Have heard from my sister and father how fast my mother's alzheimers is changing her. It's truly a terrible and long disease for both her and especially my father. At a time they both should be relaxing and enjoying retirement they are dealing with this illness. The whole time my mom is awake she consistently asks "are we doing anything special today?" This happens at times within minutes of the past. No comprehension or remembering. But ask her about years ago and she's so clear. Strange how this works. In order to keep her somewhat busy my dad will tell her to wipe counter top or just clean up some pans in the sink. But you have to watch every minute of the day just to keep her safe. Basically everything she does is a result of someone telling her what to do. I applaud my father for his patience and love that he gives to her each day. A tough job even if you are young. I did get some laughter out of her on evening though. First time I had heard her laugh in a long time. Dad always asks her if the dog p'd outside after letting him out. She quietly would say yes. I told her next time he asks her just say this: "yes, about 3 ounces." She did the kind of laugh that you almost can wet yourself. A good ole belly laugh.

This prayer has always touched my heart:

TEN REQUESTS OF THE ALZHEIMER'S VICTIM


PLEASE BE PATIENT WITH ME
Remember, I am the helpless victim of an organic brain
disease which is out of my control.


TALK TO ME
Even though I can not always answer you. I can hear
your voice and sometimes comprehend your words.


BE KIND TO ME
For each day of my life is a long and desperate struggle.
Your kindness may be the most special and important
event of my day.


CONSIDER MY FEELINGS
For they are still very much alive within me.


TREAT ME WITH DIGNITY AND RESPECT
As I would have gladly treated you if you had been in
this bed.


REMEMBER MY PAST
For I was once a healthy, vibrant person full of life, love
and laughter with abilities and intelligence.


REMEMBER MY PRESENT
I am a fearful person, loving husband, wife, father, mother
grandmother, grandfather, aunt, uncle or a dear friend who
misses my family and home very much.


REMEMBER MY FUTURE
Though it may seem bleak to you, I am always filled with hope for
tomorrow.


PRAY FOR ME
For I am a person who lingers in the mists that drift between
time and eternity. Your presence may do more for me than
any othe outreach of compassion you could extend to me.

LOVE ME
And the gifts of love you give will be a blessng from which will
fill both our lives with light forever.

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

I did enjoy the time on the Cape. Wished I had felt better but was glad to have been able to go there. No matter how you feel, there are always people worse off. You just have to remember that.

Arrived on Cape Cod

Even though I wasn't able to keep the secret from my parents, they still were thrilled to have us come for Christmas. Tim drove a total of about 5 hrs, helped Barry out a bit. I was able to rest in back seat where I had made a bed which also included a pillow. Was surprised I was able to get as comfortable as I did get. Can't wait for 10:30 p.m. to come so I can take my pain meds though. It's no worse than if I had stayed home which is good. We left home at about 5 a.m. and took our time in driving. Even stopped by my brother's restaurant to have a late lunch at about 2 ish. Then made it to my parents house at 6 p.m.

That's it for now.

Saturday is Barry's birthday and we hope to begin celebrating that and Christmas beginning that day.

HEY DAD TRY THIS LINK BELOW

Google Translate AND GET BLOGGIN!!! ADIOS MOE

Maureen,
You are so clever with your spanish! Enjoy your snow storm. Keep it there.

Feliz Navidad, Dad.

Me encanta Cape Cod. Hasta pronto. Feliz Navidad.

Clothes now fit me

Since I lost about 20 lbs. with the surgery, I am now able to wear clothes that were shoved away in a closet. Once again jeans and a lot of suits now fit me. Also have updated my wardrobe to include underwear that are not old ladies' underwear! For some reason I had not thrown away all these clothes. Believe me, I don't think I would have lost the weight just by dieting. Took something major for me to lose the pounds.

I've been thinking of how I was feeling a week ago when I was at doctor's office. Crying due to the pain that wasn't subsiding. Worried about taking pain meds. And now, one week later I see such improvement. Not painfree, but less pain. I think when you've had such pain that anything less is comforting. And for the time there is no pain it gives me hope to know that some day I will be painfree all the day.

My next appts. are the first week of January. My goal is to return to my job the following week with the doctor's approvals. My bosses are welcoming me back part-time if needed. Not sure how I'll be feeling but I do know that it will be for the better.

Anyone else know spanish

At least someone out there knows what I am writing about. She either knows spanish or knows how to translate from spanish to english. I even got a call from my friend Lisa this a.m. She was able to pick out some key words like Barry and Tim..

Previous blog posting

I got a phone call from my father tonight. Left a message voicing a concern on the blog entry. He doesn't know that I posted the comment! Now he has to figure out the message to see what it's all about! Go Dad Go.

Un secreto en español

Era hace dos semanas que Barry trajo para arriba una idea. Él deseó saber si salió del país del dios para el día de fiesta era algo que estaría hasta hacer. Es debido a la destinación ese I dicho rápidamente sí a la sugerencia. He estado intentando guardarlo un secreto pero aquí soy una pista: ¡los mariscos fritos me suenan ciertamente buenos! Así pues, si usted sabe de lo que estoy hablando, felicitaciones en su español. No sé la fecha exacta de nuestra llegada pero será muy probablemente este fin de semana. Espero que haya sitio en el mesón y que los linos estarán agradables y limpios. Barry será el conductor principal, pero si tomamos el Exporer Tim podrá ayudar con conducir. No puedo esperar para dar y para recibir abrazos muy necesarios. Estoy alegre divulgar que cada día es un día mejor. Y qué podría ser una medicina mejor pero estando con mi familia.

Explaining pix

The bottom photo shows armpit area and the incision continues and is seen in the top photo. The middle photo shows my chest. Notice the difference in skin, so pale and without freckles. I continue to bandage the area where there is slight opening. This area is the spot that continues to cause me discomfort. The 12 hr release medication usually gives up at up 7 hrs. into it, so this is when I take what is called a break through pain med to hold me until the next 12 hr. release. Every day there is improvement. All I need to do is to look back and see how far I've come.

Pix taken today. Backside where skin was taken, front where it was moved to, and under arm area. Only about 1 inch of skin needs to be healed over.

 

 

 

Food food and more food

Yesterday I went out to 2 different restaurants with friends of mine. Felt good being outside, and just being with them.

Last night was another night of sleeping without the pain. Don't like to say that too loud. Whenever I got up to use bathroom I would cautiously move. Being very protective. By morning it came back. As I tell people, it feels good to know that the pain can go away. That it's not permanently there. Just takes time.

I went out with my department for a Christmas luncheon. And I know how some people say this (including myself) but they had the best chicken parmigian! Even had a taste of the cheesecake. It was a local restaurant that I had never been to. One that we had tried to eat at but they were always full. Will definitely go back. We had a gift exchange which proved to be a lot of fun. Again, not to be repetitive but it felt good being with my friends.

I did take a nap this p.m. This is first Friday in months that Tim doesn't have band/football games to go to anymore. Feels funny having him home.

Well, that's it for now.

Christmas is around the corner and not one present bought. Haven't even done cards this year. Oh well, priorities have changed this year.

Some relief with pain, but it's back now.

Woke up this a.m. with the least pain ever in my right shoulder area. Was so pleased. Was so strange not to have all that pain. I treated it like a baby most of the day.

Tim and I did some errands after he got home from school. Mexican food and then he got his hair cut. By the time we were eating, the pain in my incision area had peaked for first time today. And of course, I had no meds with me. As soon as we got home I was able to take a break through pain relief. And now about to get into jammies. As I told Tim, I was at least less pain the majority of the day.

And yes, Moe. I did do short walk this a.m.

PS. Did take one hr. at 7:30 p.m. Set the alarm. For me it was a very long day, but I did sleep less.

Update

I did go see primary dr. this a.m. as planned. Past month or so, I would sleep so good at night with ativan and antidepressant; wake up to get Tim off to school; and then go directly back to bed. But I wouldn't wake up until noon or sometimes 1 p.m. I'm smart enough to know this is not right, but also the brain would say other things. Each pain med I would take I would hate to take, but the pain still there. ALong with an occassional panic attack which I had never had in my life. Would come about if I got sad. Knew I had to do something. Anxiety/depression, 2 terrible things. Plus unlike what I had expected, company didn't show up to chat as often had been expected. Busy time of year, but perhaps people don't want to disturb me. But being a person that is a people person, this is not beneficial to the healing. But in talking with dr. Barry did tell him I had stopped breathing exercises, bad bad bad. Not changing pain med dosage right now. When there is still pain, not for me to worry about addiction. Lower ativan dosage at bed time (that you can get more addited to than pain med) and increase my antidepressant at bedtime. As for my aches and pains, remember what was done in the operating room. Remember how far you've traveled.

Barry's been wonderful through all this. He's Mr. Clean around here.

Tim slowly is picking up his slack with laundry details. And emptying dish washer when needed.

And am so thankful for friends who have been making meals for us during the week. A true lifsaver. don't know what I would have done with out that. My weight is down to 125 down.

Incisions are healing, just not as fast as I would want them to.



I have gone out for desserts a couple of times with friends, but I think that needs to be even more. Change of scenery, plus conversations.



Right after coming home from dr. office I had a couple of phone calls. Was invited to go out to lunch with a person at the college. SHe mush have had ESP. Another girl called and we'll plan something next week, after her sore throat goes away.



So my challenge is this. Look forward. COntinue with adjusted med dosages (and yes, they may need to be tweeked). And to stay away more during the day. Take what a nap should be, a smaller version timewise!



And like I've said before, just call me to get me out of the house. As my sister has told me, this blog is also my therapy.

Need to get off pain meds

even though I still have pain. Don't like the side effects at all. Very depressed and I feel like my chest is going to blowing up, anxiety. Have made appt. for 9 a.m to see family dr. Hate this feeling.

Wanted

Wanted: A phone call just to say hi, how are you feeling?
A phone call just to say hi, how about some icecream?
A phone call just to say "lunch".

Working for me was always a form of therapy, got my mind off of the disease. But now that I've been home, I sure do miss conversations. I have not driven since the surgery since I continue to be on pain meds.

A had a couple night gatherings with friends this week that went along the above lines. Just conversing to another takes your mind off of your pains. And a lunch date today. Does pick up your spirits a bit. Healing can be very frustrating.

99 percent of the time I am home and just resting/healing. The incision is slowly healing, perhap has about 1 1/2 inches of open space to close up. Coninue to have aches in my upper body, collar bone/shoulder area and of course where the skin was taken from. But each day is better. Will tave Tim take some recent pictures for my blog.

At this morning's weigh in I was down to 126 lbs. Lowest in more years than I can count. Actually took a pair of jeans out of closet that were headed to Goodwill.
My appetite is not as good as it has been. I think when you don't feel good, you don't eat as much. Nothing wrong with my sleeping.

Well, that's it for now. WE had our first snow this week, therefore I cross my fingers as Tim heads off to school in his car.

nothing new to report

I'll be so happy when I write that the pain has gone away. Had not expected this at all. The area under my arm/armpit area continues to heal but very slowly. Raw skin attempting to close up from inside of body to outside. Talk about raw skin, outch. I have been blessed to have Patti help me change and make sure it's healing at an ok speed. Helps to have a set of eyes that know something medical. She did say it could be a long process just to have that skin seal up. Another area of continuous pain is shoulder blade area. Don't forget they broke my collar bone for surgery.

Barry's been so good taking care of me. Have been down in dumps a couple of times, thinking I should be better than I am. He reminds me of things that were broken in my chest area just to get rid of cancer.

As I've said before, my door is open for company. And if you know me, I will be honest if/when I get tired and need to rest. If and when I nap, I have cordless phone right beside me. Easier to pick up that way.

Well, off to bed. Night.

A difficult time for my body...but this too shall pass

I've had such a trouble past couple of day filling new drug scripts, due to holidaty and script amounts not accuarately avaiable. And ssome stores just dont carry hard drugs like oxcycottin'/oxcoycone. Finnally after a couple of days since my dr. visit for new scrips on wednesday and going to many stores Barry and I was able to get the drugw. By that time this p.m I was completely out of all pain killers, and really in need of some. Barry's been so patient and helpful with m, especially feeling crappy himself. Got home and the took pill rightaway. AM sure that if I was a teenager I could get the drugs on a street corner. The went right to bed.



Looking forward to Dancing with Stars show. Tim went deer hunting today, haven't heard of any results yet. It poured most of the day here, luckily not so much bad weather there.

Looking for day that pain leaves my body and the muscles relax.

It takes time to heal..

Yes, it was a long day in the city for appts. First appt. was with plastic surgeon at 9 a.m., area is healing very nicely. Just need to cover it twice daily with a saline coverered gauze. Follow up appt. in 6 weeks.

Then off to have chest x-ray. That was the first delay. A long delay and it was made worse by having to sit in uncomfortable chairs. Thank goodness my brain was working in overtime. Since my surgeon's appt. was one floor up in building, I took off and signed in ahead of the scheduled appt. time. Then eventually went back to wait for x-ray. Took a matter of minutes for that test.

Then up to wait for the main surgeon. I think our appt. was at 11 a.m. and we didn't see him until 2 hrs. later. Not sure. He has increased my pain meds, still no baths for me. And am still limited to what I can do with my arms/chest area. Basically restricions remain the same. They will be contacting me for follow up appt. in about 5 weeks.

The surgeon made a comment that hit home to me:

Just look at what you've been through these past few weeks. You've accomplished things that you thought could never be accomplished. From a simple cough to taking a deep breath. From laying in a bed to sitting upright in chair. By looking in the past you can see how much strength you have for the future.


I was a very unusual case for him, but one he had complete faith in the outcome.

I'M BACK AND JANE IS BACK FROM APPTS!!

Just a quick note on Jane-I just talked to her-all the appts went PERFECT including the CXR. An exhausting day for both she and Barry-both with pain today. The pain meds increased on Jane.Enough for now and Have a Great Thanksgiving!!!

Follow-up appts. in Pittsburgh tomorrow a.m.

I meet with plastic surgeon at 9 a.m., followed by chest x-ray 10:40 a.m. The the meeting with main surgeon is in same bluilding at 1l:00 a.m. sure hope they are running close to schedule because I don't think I coul sit in waiting room chair for more than 30 mins. Looking forward to seein both drs. for their feedback, especially to tell them that the pain is still there.

Off to bed now. For me, it will be a very early wake up call in a.m.

PS Tim did go bear hunting Monday, only saw tracks in snow. Back to camp area this coming weekend for deer hunting. The boys did see lots of deer there.

One week later and still about same

Have heard from people that they are concerned cause I haven't blogged. My typing is so bad right now. Head/brain-keyboard doesn't want to be the same. HAve been having same pain/discomfort. I do go back to Pitts. on Wed to see plastic surgeon and primary surgeon. The front chest area is healing so nicely. Under arm where they took skin from is very tender. just keep reminding myself that I've ben through a lot.

And even though I haven't felt my true self lately, my door is usually open. Sleeping in one thing I'm good at doing, less pain that way.

No infection

Went to Pittsburgh yesterday a.m. and met with plastic surgeon. Local home care nurse, and my primary doctor, wanted it to be checked out. And of course, I certainly did. No infection, healing perfectly. The doctor said "a masterpiece."

Continue to be in lots of pain. Out of score of 10, it's an 8 or 9. Can't ever seem to get rid of it. Spoke to primary doctor this afternoon, is doubling my oxycodone effective tonight. Also had me take a percocet, which I did. Then went to bed and tried to lie motionless. No results yet. Very, very uncomfortable, but then just look at the pictures. To cough is like dying. Most pain in shoulder/back area and under my left arm where they took the skin for my chest. Just have to be patient, but very hard to.

Barry's not been feeling well either. Never complains. Has shoulder/side pain.
But he's been keeping up with the housework. Taking pride in it I believe. Awfully good to me these past few days, waiting on me hand and foot.

Off to rest. Bye

Congatulations Tim!

I wasn't able to attend the induction ceremony last night, but Barry did. Tim was inducted into the National Honor Society. I can not miss this opportunity to praise Tim on this accomplishment. I put myself into my job, and he must do the same thing with his school work.

Again, Congratulations!

The large "pasted" area is the flap taken from under my left arm area.

 

 

More pictures of my bionic chest. Looks like a tattoed necklace.

 

 

Family is priceless. Maureen truly did a great job updating our family and frineds, and for using her cold hands on my hot forehead. Felt so good.

 

 

 

 

Back to Pittsburgh plastic surgeon tomorrow a.m

went to primary dr. today as followup to what nurse saw yesterday. am on antibiotic but have been told my plastic surgeon to go there in a.m. they already made appt. for me before they called me. also increased my meds to be extended release, more strength. pain has always been a 9 and they recognoize i need releif.

off to couch now.

Back to Pittsburgh plastic surgeon tomorrow a.m

I'ts ME again.......Back online after a long delay

Yes, it's truly me online now. My typing actually has improved since yesterday. Just a quick hello and then back to the couch.

Met a nurse one night as she was interested in one of my monitoring machines. Asked my what procedure I had had, told her and she had a comment that I would have made.

Since your skin from under your arm area is now in your chest, do you have to use deordorant now on your chest!? Funny lady..

UP THREE FLIGHT OF STAIRS WITHOUT INCIDENT!!

Yes I still have the blogging job as Jane said her fingers typing and her brain are all messed up. Just talked to her and she is still with some shortness of breath and breathing treatments tolerated well. In conversation, wanted me to pass on to her work buddies whom I asked not to send flowers and to get her a nice pink jogging outfit for her trip home. Well she loved the whole big bag of nice soft pink old navy clothes-when she was getting dressed with Patty and Jody helping her she realized she had old lady blue underwear and the pink pants were hip huggers but who would really care about the underwear showing!! After what she has been through a laugh is good. She also liked the cancer sucks shirt from another friend. Prior flowers appreciated from prior work buddies Hermitage Bank and the President of the Westminster College. Pa had told Tim to get her some flowers from him and ma-did the run to the store and got some nice bunches of flowers-THANKS!! She was able to sleep half the night on the couch and then back up the stairs to her bed for rest of sleep-has a hard time getting out of bed as she can't use her chest or arm muscles.
Earlier in the evening had taken a short shower and washed and curled her hair-only kidding about the curling!! Barry worked out in the yard today. Tim survived the play the other night.When she checked emails today on third floor had 200 in the system-will take some time to read. Well I was back to work and all my buddies did not believe how good Jane looks-I had taken pics myself and can't put on blog-she wants to post same but has to download. Well at least this sat night Tim and I are not lost in Pittsburg with a gps system. I still laugh when I asked Tim to call one of this friends to help us find our way home, and he turned to me and said "maureen my friends are 16 years old and some don't have cars" duh!! What a difference a week makes. adios moe

LOVING THE COUCH!!

No it is not JANE,it is moe again. I had told her last night i would wait for her to call me today, but i couldn't wait any longer so i called her. She is too tired to do the blog today. I did mention to her that at this time there were 17 comments and she said "WOW". Thanks to Patty and Jody she had a successful ride home from the hospital. Barry rested at home. Tim did the pharmacy run. She basically slept on the couch until around 3:30 am and then up for pain med and back to the couch. Today was filled with a nursing visit, respiratory treatment-reinstruction with use of machine,measuring incision-cleaning incision etc. Barry said lots of napping. Tonight she will venture up the stairs as she wants to shower and wash her long hair!Also spent some time booking follow up md appts. She will be surprised when she notices I put away all the hats,wigs,scarfs,etc,into her closet-i did leave a note that nothing was thrown out. She is still off and on short of breath but I think she
is doing great. Well I am back to my nursing job tomorrow in which my philosphy is put a smile on my face cause i am not in the bed!!!!

WELCOME HOME JANE!!!

I just talked to Jane quickly and she just got home. Having spasm pain as the pain med is past due. Rest up Jane and glad u are home safely. Love u lots, your guardian angel sister moe

I LEFT ON A JET PLANE 12;45 AND HOME IN HOLLISTON 4;30PM!

Let's see how good I can post from far away. Well Barry and I left for the airport with snow flurries part of the way. Jane had told Barry not me prior to leaving that she had an awful night with the need for cxr,iv pain meds, for excruciating back pain at site of last drainage tube-very little sleep. I don't think she wanted me know this but I did ask her tonight about it. She was able to have a decent day and able to sit in the recliner from pre-breakfast to suppertime. Not sure if discharge to be tomorrow. Patty her friend is lining up ride home whenever with a van. At this stage she is not to use any arm,chest muscles so things can heal. Still says a little wheezey and gets breathing treatments. Her cell phone is dead. Barry felt lousy today so opted it was better to stay home and rest-he has slept very little since friday and aches a lot. Well off to relax as I am beat. My dog Duncan who has cancer himself jumped up so high when he saw me and must husband did a little jump.
adios moe

LAST DRAIN OUT SO I CAN GO HOME SOON!!

Just talked to Jane and she had a better night.Last jackson pratt drain removed.The lower gi tract will be running soon since she got laxatives last night. Barry will be bringing me to the airport-leaving around 10am and will get into Providence around 3;30pm. Barry has the sweats,aches, and pains from the neulasta so Jane told him to stay home today and rest.Have a good day and I do see some snowflakes today.

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