Thursday, September 27, 2007

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.

Wednesday, September 26, 2007

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.

Tuesday, September 25, 2007

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.

Sunday, September 23, 2007

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...

Friday, September 21, 2007

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.

Thursday, September 20, 2007

"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.

Monday, September 17, 2007

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.

Sunday, September 16, 2007

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.

Saturday, September 15, 2007

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).

 
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Friday, September 14, 2007

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.

Thursday, September 13, 2007

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.

Monday, September 10, 2007

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.

Sunday, September 09, 2007

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.

Thursday, September 06, 2007

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!!!!!!

Tuesday, September 04, 2007

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.

Monday, September 03, 2007

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.

Sunday, September 02, 2007

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.