Monday, March 30, 2009

I don't think this is a good sign

When Jeff first showed symptoms of the tumor his left eye would not move past center - to the outside. After the tumor disappeared in November his eye had full lateral movement. Today I noticed when he was looking at me his good eye (right) was focused dead straight at me - but his left eye was way to the right side (by his tear duct). I'm certainly concerned about that because this is what happened last year - but now it seems to be worse.

I am thankful he has an appointment with the eye surgeon on Thursday afternoon. She wanted him to come in to check the eye that had the cataract.

Please pray that this is not what I think it is (return of the tumor). He has been complaining about eye pain - and I had attributed it to nerve regeneration. I think my theory has been blown out of the water.

Productive Monday

We had quite a rain storm on Saturday evening accompanied by lightening and thunder. We must have had a ton of pollen in the air because on Sunday the deck was all stained yellow. Even hosing it off didn't remove the stain. Today, while Jeff was resting, I pressure washed the deck after applying pool chlorine. Thank goodness all the stain was removed. I also used the opportunity to wash off all the lawn furniture. Chore completed.

Jeff had a restful weekend - but still was plagued with pain. Fortunately he has no chemo this week so he can regain some strength before starting again the following week. I did ask him today how he was and his only comment was he felt "down". That is so sad - I wish I could encourage him to feel positive. When you are DOWN to nothing... God is UP to something! Faith sees the invisible, believes the incredible and receives the impossible!

Have a great Monday.

Saturday, March 28, 2009

A calm Friday and Saturday

Last night Jeff decided that he would try sleeping in our king size bed instead of his usual couch. He discovered it was much more comfortable and he got a pretty good night's sleep considering he must have gotten up in the middle night and moved to another bedroom. At least he was in a bed and not on that couch.

Good news yesterday - he actually ate 3 teaspoons of cream of wheat and also a fork full of my dinner salad. I'm sure you are saying to yourself "what a combination". At least he was willing to eat something. Now I call that progress.

His pain level must really be down because he's not asking for pain Rx. His balance and speech is so much better when he's not taking the hydrocodine. I'm thankful for that.

So all in all - the past two days have been a welcomed change and I'll take that whenever God wishes to give it to me.

Have a great weekend.

Thursday, March 26, 2009

I guess my hearing is not too good .... let me explain

I took Jeff for his sixth chemo this afternoon and had three questions for his "Harley riding" Oncologist. I knew we weren't scheduled to see him - so I just hand a note to the nurse who administers the I.V. (Not that I don't slip into his office on the way out for some light conversation). He's such a neat guy and great bedside manner with his patients.

Now to the hearing problem I must have ..... this was NOT his last chemo. When Dr. H had originally told me 6 treatments it was really 6 (3 session) treatments = 18. Every fourth Thursday he has that off. So in reality Jeff has only had 6 treatments - next week off - and then another 3 treatments - the following week off, on and on until he has completed a total of 18. Then a PET scan will be scheduled. Duh! So we have a way to go before the dreaded PET.

Also he has a urinary tract infection - so will pick up a Rx for that. Thank goodness for Medicare and his supplement Rx insurance.

That's the update ...... I just hope I can keep all of this straight because not only my hearing must be getting bad but I've heard the memory loss follows....

Have a great evening!

Wednesday, March 25, 2009

Wacky Wednesday

I THINK I accomplished quite a bit today. Not only did the speech therapist arrive to work on Jeff's facial muscles but my screen men showed up. I had to have three screen panels replaced as well as hardware on the man-door. The screening and spline only last about 10 years and you can see where the spline is shrinking. They gave me a good tip - if a hurricane is headed our way I should slash all the screens - which would save the cage. Replacing a cage would cost around $9K versus replacing all the screens at $900. I never thought of that.

After that was all completed I had to take Jeff's van in for an oil change along with having the new tire put on. Thank goodness there were no customers so it only took about 45 minutes to accomplish those two chores.

Tomorrow is Jeff's last chemo in this series - then we will schedule the PET scan. He's plugging along - but last night he was very confused. That always worries me when I'm trying to fall asleep. To be on the safe side I've taken the car keys out of the ignitions. That would be my luck - if he got in the car thinking he could drive and then end up in an accident. I don't need that on my plate as well.

My mother should be moving to the new assisted living facility shortly. There was a big open house reception last night - but with the van just having the temporary tire I couldn't risk driving up to get her and then drive her back. The mechanic said I should not drive far with that tire. I know she was disappointed - but it was not in the cards. Hopefully they will have more open house receptions (complete with a band) after she moves in so she can see what she missed out on.

Have a great Wednesday evening....

Monday, March 23, 2009

When it rains it pours - addition to post earlier today

All went well with the early appointment my mother had with the new nurse. On the way back I took her over to the senior community center to visit with all her old friends prior to dropping her off at Cedar Creek. After dropping her back - I turned around in the parking lot and apparently hit the cement curb - tearing the back tire of the van. Thank goodness there is a foreign auto repair right on the corner - so walked over there and they had me drive the car over. They changed the tire and on the way home I stopped by the place where I get the oil changed and the tires rotated. Al - the owner is ordering me a new tire and it should be in by Wed. It is time for an oil change so will use that opportunity to do both at the same time. I just wasn't planning on paying an additional $165 on Wednesday.

Oh well - it was my stupid mistake - not judging the distance to the curb. Better believe I will back out of that parking lot in the future.

Survived another Sunday night

Thank goodness it's Monday. Last night was no picnic! I truly believe Jeff has his days and nights mixed up. As I had posted in the past - for three days after chemo his sense of time, etc. is on target and this I believe is from the steroid that is mixed with his chemo drug that he gets on Thursday. When that wears off we are back to confusion and roaming all night.

He slept most of the day on Sunday only to be up pretty much all evening. I woke up around 4AM to see all the lights and TV on with him walking around without his walker. I think I found the walker outside on the lanai. Not using the walker poises a real danger because we have all tile floors and one fall could result in broken bones. I got him situated so I could go back to sleep only to hear him up again five minutes later. Around 5AM I decided that I might as well get up and start my day. If only I could find a way to keep him awake during the day so he'd sleep at night. That's next to impossible unless I put him in the car and drive him around during daylight.

The nurse at my mother's new assisted living facility called last week and wants to meet with her this morning to go over her medical needs prior to her move there. The move is getting closer and as soon as they receive their state occupational license they will be allowing everyone to move in. Hopeful this will take place the first of April. That will also depend on the availability of the movers.

Jeff's cataract surgery has been successful as far as I can tell. It's really strange not seeing him wear glasses. The only downside to the surgery is all the eye drops that are required for two weeks after. At least we have five days under our belt so we can see an end to this chore in the not too distant future.

This week should be an easy one - with only three days of facial stimulation by the speech therapist and chemo on Thursday. This is last one (of this series) and then we will schedule the PET scan to see where we are. Hopefully, with all your prayers, it will show that the new chemo drug is doing its job. Unfortunately I think that the radiation he received last summer did a number on his memory and response time. I hope I am wrong on that front and the chemo he is receiving is causing this because then it would be temporary. That's a question I will ask the Oncologist on Thursday.

Friday, March 20, 2009


What a whirlwind this week. Yesterday we had an appointment with the eye surgeon. Great news on his cataract removal - they had him read the eye chart and he could read all the lines except the very last line (the smallest print). She said his vision is now 20/30, which is great for the day after surgery. Most likely within the next two weeks it should get to 20/20. He will need glasses for reading. It's so strange not to see him with his glasses on.

She also said she is going to wait until his right eye is completely healed before taking off the other cataract.

After that appointment he went for his chemo. He has one more treatment next week and then the PET scan.

Now I can look forward to 5 days with nothing on the calendar except a much needed haircut. Time to treat myself.

Have a great weekend everyone.

Wednesday, March 18, 2009

He can see clearly now .......(song)

Today was very quick paced. We thought we had time to spare and then got a call from the outpatient surgery center. They had some cancellations and Dr. Linda Lepik was available to come in earlier. We were originally scheduled to be there at 11:45 but they changed arrival time to 10:15. We got a call at 8:45 and had to leave the house by 9:20 to drive the distance and arrive on time. Thank goodness I was pretty much ready - but getting Jeff's butt in high gear was hilarious.

The cataract removal only takes about 15 minutes - but you all know the before prep and the after procedure of apple juice/cookie consumption takes time. Needless to say he just had two sips of the apple juice.

While in the waiting room prior to the appointment I saw a woman walk out with a clear plastic guard over her eye and the rest of the people were walking about with a black guard over their eye. Hmmm - it would seem the clear plastic would be better as it has to be taped over his eye at night and just using his bad eye would be an invitation for disaster. I mentioned this to the nurse after I got back from Walmart - while Dr. L was still back with him. She went back and got the clear plastic and sure enough - he was wheeled out with it taped on his face.

He told me this afternoon that he can see better out of that right eye and to me it looks clearer. A follow-up appointment is scheduled tomorrow - 9:25 and then on to chemo at 2PM. If any of you want to reach me - I'll spend the 1.5 hours with my mother having "tea at 3". I think I'll even have a brownie ....

Have a great evening.

Monday, March 16, 2009

Monday's reality

This morning reality set in AGAIN. After undergoing 16 chemo treatments - Jeff's hair is slowly starting to fall out. I know he hasn't noticed, which is a good thing. He was so happy that up to now he beat the odds of hair loss. In fact after his radiation treatments his hair came in real curly and was turning dark - the grey was disappearing. Now this! The good news is I have a nice straw hat he bought about ten years ago and never wore. It will come in handy now!

Got a call this morning from the visiting nurse. She's scheduled to stop in around 3PM to re-certify him with Medicare so he can continue to receive the facial stimulation therapy three times a week. Then off to see the eye surgeon at 6PM. She wanted to see him after all her patients left - so he wouldn't have to wait.

Decided to give him a morphine yesterday afternoon. I thought it would be safe because he had been off of them since he was admitted to the hospital about a month ago. Wrong idea .... he just can't handle those. He was back to being very confused, had difficulty walking and in general not doing well at all. He's now back on the Hydrocodone and he tolerates that pretty well.

After Jeff's eye appointment I think I'll treat myself and stop by McDonalds for a hamburger. I'm selfish and don't feel like making dinner in the middle of the night. It always takes about 1-2 hours when he has an eye appointment and it takes another 45 minutes to drive home.

Have a great Monday everyone!

Sunday, March 15, 2009

Wonderful Surprise - Sunday

I woke up to a wonderful e-mail this morning. It said I should look by my front door.... Needless to say I immediately found a gift from a dear friend of ours. A beautiful card and a book entitled "The Last Lecture" by Randy Pausch. I can't wait to start reading it. He was a Professor of Computer Science, Human Computer Interaction, and Design at Carnegie Mellon University.

Professors are asked to consider their demise and to ruminate on what matters most to them. What wisdom would they impart to the world if we knew it was our last chance? If we had to vanish tomorrow, what would we want as our legacy?

He had been diagnosed with terminal cancer prior to giving his last lecture and his lecture was about the importance of overcoming obstacles, of enabling the dreams of others, of seizing every moment (because "time is all you have .... and you may find one day that you have less than you think." He said "We cannot change the cards we are dealt, just how we play the hand." Isn't that the truth.

Have a great Sunday!

Friday, March 13, 2009

What a day yesterday

Let me back up .... on Wednesday we saw Dr. Linda (the gal that is going to do the cataract procedure). She had an ultrasound done on Jeff's good eye ..... dilated his eyes, yada yada yada. On the way home he started feeling pain in that eye. It was pretty severe and I didn't know if I should take him to the hospital. Instead I called Dr. Linda's cell phone and of course no answer.

Thursday morning I got him up early - showered, shaved, etc. Drove the 30 miles south to see Dr. Linda (without an appointment). Luckily I saw her in the hall and had a chance to talk to her. For some odd reason her phone did not register that I had called. The waiting room was packed and I was concerned we'd have to wait. This was not an option because he had chemo scheduled at 2PM - about 48 miles north. She took him in immediately (no waiting). I truly believe there is a God ...

Long story short = his eye had dried out from the ultrasound. She numbed it - checked it out and thankfully there was no infection. She gave me an antibiotic and drops to be on the safe side. Got him home to rest before chemo.

Off to chemo and left papers for his Oncologist to stamp his approval for the procedure (which he did sign). He also gave me a Rx for the Thrush infection in his throat as well as a pain Rx.
Dashed off the health food store for mother --- took up her purchase to the assisted living facility, fixed her computer and had time for a cup of tea and then back to pick up Jeff. Dropped off the Rx on the way home - fed him and then back to pick up the prescriptions and do a little grocery shopping. By the time I got home it was 5:30PM - only to find out that the pain Rx the doc had given me was the same pain Rx that landed him in the hospital a few weeks ago (Morphine). If any of you need any morphine - just let me know. I'm sure as not going to give him that stuff again.

This morning we are back at Dr. Linda's so she can just check his eye. The cataract procedure is scheduled for Wed. afternoon. For two weeks after the removal he needs 4 different eye drops in his eye every 2 hours. I guess he will be joined at my hip. Also he has to wear a patch on that eye at night - so if he gets up in the night he will be navigating with his bad eye. This should be a real challenge and I'm anxious to see how that goes. I guess I will be sleeping on the other couch adjacent to where he sleeps so I can help him. So if I'm venting the next two weeks you'll know it's from a lack of sleep.

All in all I think it will be just fine and in the end hopefully he will see a big improvement.

And the beat goes on ......

Have a great weekend everyone!

Tuesday, March 10, 2009

Stages of grief

Before getting up this morning (4:15AM) - yup you read that right - a thought crossed my mind about grief. The professionals are always talking about the different stages of grief a cancer victim experiences - but in reality doesn't the caregiver/family go through these as well? I have listed them below and in reviewing them I can say I have gone through some of these myself. I find myself at this time in the "acceptance" stage. Like it says - it doesn't mean I won't be flip flopping back and forth.

What are the different stages of grief?

The person with cancer, spouses, parents, siblings and other family members will all experience grief. In general, grief has been described to occur in five stages. However, it is important to remember that people experiencing grief may move in and out of these stages in their own time and in their own way.

  • Denial
    Denial is a stage where people try to believe that the cancer diagnosis is not happening to them or their family. One may feel numb or in a state of shock. Denial is a protective emotion when a life event is too overwhelming to deal with all at once.
  • Anger
    Anger is a stage in which you understand the cancer diagnosis but are very upset and angry that it has happened to you, a friend or family member. One of the best ways of dealing with bursts of anger is to exercise or participate in another type of physical activity. Talking with family and friends, other people who have cancer and the hospital staff also may be helpful. The person with cancer also may be able to express his or her anger either verbally explaining how he or she feels by writing in a journal.
  • Bargaining
    Questioning God, asking “Why me?” and “What did I do to deserve this?” are common questions in this stage. It is normal for the person with cancer to make bargains with themselves or God in hopes that bargaining will make the cancer diagnosis go away. Guilt is a primary emotion during this stage. Searching for something that you personally did, which could have contributed to the cancer, is all part of bargaining. People tell themselves or God that they promise not to do something they previously did (such as arguing with family members), or to start doing something they have not done (such as going to church regularly) in exchange for their recovery.
  • Depression and sadness
    This stage of grief is one in which the diagnosis of cancer can no longer be denied and those involved may feel a profound sense of sadness. These feelings are normal. This stage can be accompanied by physical changes such as trouble sleeping or excessive sleeping, changes in appetite, difficulty with concentrating on simple daily activities or feeling a constant fear that someone else in the family will be diagnosed with cancer. It is important to talk about depression with a health care professional such as a social worker, counselor or meet with a support group to help you cope with your feelings.
  • Acceptance
    Acceptance is a stage in which you have accepted the cancer diagnosis and are at a point where cancer has been incorporated as part of your life. You have made an adjustment to your illness. Acceptance does not mean that you will never feel other emotions, but usually families find that they are better able to manage their lives overall upon reaching this stage. Going through the grieving process is the best way to cope with a cancer diagnosis. By giving yourself and your family permission to grieve, you will be able to cope.

Sunday, March 8, 2009

Am I being selfish

On Friday I came up with the idea that I might be acting selfish wanting Jeff to go through with his cataract removal on top of everything else he's having to go through. After talking it over with his speech therapist she confirmed that this was a "good thing" as long as his Oncologist clears him for the procedure. She went on to say that anything that can give him "quality of life" is a plus. When a person notices an improvement in any health issues it releases endorphins in the brain - giving them a "high" feeling. She also said that is why she is continuing the facial stimulation. It's important to continue any treatments that make him feel like he's moving forward and not backwards. So with the Oncologist's approval (which I hope to obtain on Thursday) the cataract removal will take place on 3/18.

This morning he said he felt much better and I attribute that to not having chemo this week. Next week he will start back on chemo for the next three weeks (once a week) and then another PET scan. One good plus is that he has not lost any hair - and in fact it is growing so fast after just two weeks he needed another haircut. The only side effect I detect so far is a few little split fingernails which are filed down as soon as I see them.

Today will be spent pick up my mother to take her shopping at Walmart. Not the store I wanted to go to but I can always pick up what I need when I go out alone. She has been such a trooper - in that I can't get up to see her as much as I would like. She doesn't complain at all - one less thing for me to feel guilty about.

Have a great Sunday.

Thursday, March 5, 2009

Medical Family Therapist

As I had mentioned in a previous post, Boissoneault Oncology Institute has a Medical Family Therapist on staff to meet with patients. Today we had a visit with Patrick Meadors, PhD.... Early today I had asked Jeff if he wanted to write down some topics he'd like to cover and he said he had plenty and he'd remember. Ooookkkkk!

Not knowing what to expect the therapist asked if I wanted to come in - but I thought Jeff might feel more open to discuss whatever without me there. About 30 minutes later Patrick came out to get me and said Jeff was having difficulities hearing him.

It was interesting - we discussed ongoing pain causing depression, trying to eat via mouth, and for Jeff to stop mourning what he use to be and focus on where he is now. We'd all like to be what we were .... but find something redeeming at this particular moment. When Jeff left to visit the men's room, Patrick and I discussed anticipatory grief. While it may help the family, the very ill or dying person may experience too much grief, causing the patient to become withdrawn.

The sum and substance is he is going to talk to the radiation doctor about getting some pain management as well as a Rx for the thrush he still experiences in his throat. He also said we could set up another appointment - but the next two weeks we are concentrating on his cataract.

I think Jeff had trouble hearing him because he spoke in a higher pitch. Poor guy - on the way home he said he had hoped to get more out of the session. We also found out they have a Head/Neck cancer support group that meets the third Wednesday of every month. I'll suggest that in the future.

Lisa, the speech therapist, had to cancel again today. Her little son is still very sick. Hopefully she will be here tomorrow.

Have a great evening.....

Tuesday, March 3, 2009

Long day .... but a lot accomplished

Started my day by calling Jeff's primary doctor's office to see if the PET scan CD's arrived from the diagnostic center in New Port Richey. Second time they were sent out and of course I got the same response - "No Mrs. Salow nothing arrived". Our attorney has been asking for them since Feb. 2 ..... and thinking I could save myself and Jeff the long trip south I thought it would be easier for them to mail the CD's to our doctor's office.

So I called NPRichey diagnostic office and told them we'd drive down this afternoon to pick them up. That way I could get them in the mail to our attorney so he can send those to New York.

This morning we got an early start - went up to my mother's place to deliver her Rx that arrived via mail and also stopped to buy some plastic cups that go over the legs of her walker. Without them the walker is difficult to move smoothly.

Oh yes - between all the trips I was able to spray the bushes that are dying in our yard. The little sprayer I borrowed worked great. Another chore accomplished.

On the way to the post office to mail the PET scan CD's - got a call from Sunflower ALF so instead of trying to call them back I stopped in to see what they called for. She wanted a shower chair ordered for her new room - only to discover she had one that Medicare paid for back in 2001. Medicare only pays for medical equipment once. I also found out that it probably won't be until the middle of the month when she will be able to move. They are waiting for the State authorities to walk through and give their stamp of approval.

Have a great evening - I definitely will.

Monday, March 2, 2009

It's going to be a long day

The dreaded Sunday night has come and gone. I can set my watch to it ..... the third day after Jeff's chemo and he's back to wandering at night. Sure wish I could talk the Oncologist into giving Jeff a Rx for daily steroids. Normalcy returns to our lives right after his chemo treatments when they include the steroid with his Taxotere chemo solution. Unfortunately a daily steroid would be harmful. He has this week off for chemo and next week he will start one a week for the following three weeks followed by the dreaded PET scan.

Today I will get the ball rolling for his cataract procedure. This will require one ultrasound test and an appointment with the eye surgeon. (Update - test will be a week from Wednesday 3/11 and on 3/18 - they will remove the cataract). He also has his weekly facial stimulation sessions on Wed/Thur/Fri.

Update on the bill from Citrus Memorial Hospital (Radiology Dept.) .... for $5.57. Well the bill was "sent out in error - please disregard it". Hmmm!

You'll get a kick out of this .... a few of our Silver Thorn bushes look like they are dying. Being new to the outdoor vegetation and all that entails I poured some chemical into the sprayer - added the required water and pumped up the sprayer. I was all set to start spraying the pesky insects that are killing the plants only to discover the sprayer does NOT work. What the heck! So today I will canvas the neighborhood to see if I can borrow some one's sprayer. (Update - a dear friend's husband has a sprayer - so that problem is solved). Nothing is easy. Like I said before chaos isn't a theory it's my life.

Have a good Monday everyone.