This Month's Blood Work Results

Another month has gone by and Steve had his blood drawn to be checked before his next round of chemotherapy. Here's the latest:
wbc 4.4
rbc 4.47
hemoglobin (normal range is 14-18 gm/dl) 14.1
hematocrit (normal is 42-54%) 42%
platelets 119,000
creatinine 1.2
BUN 20

Nothing out of the normal for Steve.
They follow up with Dr. Hu again on Friday.

Here's a couple of pictures from Thanksgiving. We didn't take many :)

Pre-Chemo Blood Work and Starting the Next Round of Chemo

rbc 4.58
wbc 3.9
creatinine 1.2
BUN 15
platelets 118,000 We don't know why it was normal last week and not this week, but it's within the expected range for a man on chemotherapy.

Also, Terry says she will start reporting hemoglobin and a second lab value which measures a part of the red blood cells next month. Those lab tests have been done all along but she hasn't been following them before. Now that we are familiar with these tests, it's time to expand our knowledge.

The above blood sample was taken Sunday morning. It had to be fasting since it is also for his 6 month nephrology follow up appointment.

At 9:30 Tuesday morning, Dr. Hu called Terry to say not to panic due to the platelet number change this time from the normal 150,000 to today's 118,000. He's awfully thoughtful. He also said the numbers showed that it was ok to start chemo on schedule Tuesday night. Steve started his 300 mg Temodar last night after taking two Zofran anti-nausea pills, as usual. He continues to take Zofran daily even if he is not on chemo because he still gets stomach aches, like if he ate strong salsa and had heartburn, otherwise.

Yaaayyy, Another Good MRI!

Steve had his MRI this morning to look for signs of recurrent tumors. It was NEGATIVE! Whoopee!

It's been almost one year since we learned about the onset of this awful brain cancer. I know it has been a trial for Steve and his family and all of us who love him. I'm so pleased with how he is doing at the one year mark. He is feeling well, working productively and loving his family.

We will be at his home for Thanksgiving again this year. I think we have a lot to be thankful for. I know Steve and Terry are thankful for all the support from you, their friends.

Happy Thanksgiving in two weeks.

Recent Labs and Next MRI Scheduled

From blood taken 11-5-12:

wbc 4.9 (normal)
rbc 4.53
platelets 212,000 Yay, normal!
creatinine 1.0 !!!! Normal! We didn't expect that :)
bun 17.7 (normal)

rbc is microscopically, slightly low (4.6 is normal)

Steve is tolerating his chemo very well and is planning to start his eighth round next week. His original dose was 140mg of Temodar and the dose increased regularly to the current dose of 300mg.

His 4th MRI is scheduled on Friday 7:15 am followed by a Dr Hu appointment at 8:30 am. Please continue to cross your fingers and toes.

The Latest Doctor's Appointment

It's time again for Steve's monthly lab work. Here are the results of his blood test taken during week 3 after the last round of chemotherapy. As of Tuesday, October 9th:

wbc 4.5 (normal range 4.3-10.8)
rbc 4.19 (normal range for men 4.7-6.1. Steve is just a little low.)
creatine 1.19 (Still technically high but within what the nephrologist thought would be his new normal range).
platelets 121,000 a little low (normal 150,000)
bun 19

Dr. Hu says the numbers mean Steve is fine, there is nothing alarming, Steve is doing great. They will continue the same dose, 300 mg Temodar as last month. Temodar is dosed according to body mass. At Steve's size the very highest dose would be 370 mg. Due to how sick Steve was during the initial, intense delivery of chemotherapy, they don't expect him to reach the 370 mg level. The doctor is happy with the 300 dose. As usual, Steve will have another round of blood work soon, just before the next round of chemotherapy begins.

Earlier this month, Steve had a mild reaction after his flu shot was given. He felt chilly, shivery and nauseous for a short while. We think his reaction was worsened because of the chemotherapy. Normally, Steve feels fine with regular anti-nausea medications. He has been maintaining his 245 pound weight. He started at 306 pounds before his diagnosis. He is walking their dog, Amber, on weekends. He stopped using the treadmill since he's too tired after work.

Their family went to Disneyland one Sunday through Tuesday and had lots of fun and some good quality family time. Steve didn't require any more rest periods than any one else as they took an afternoon break back at their hotel before returning to the park in the evenings. Good times!

MRI Results

This came in an e-mail from Terry today. She also mentioned that Dr. Hu will be increasing Steve's Temodar dose to 300 mg this month. I hope he doesn't feel too nauseous with the stronger amounts:

 

Hi all....Summer flew by and the kids are back in school. Hope this finds everyone well. Steve had his bimonthly MRI today, and it came back CLEAR!!!!!!, So far the maintenance chemo is going well, and his creatin levels have stabilized at 1.2 (Kidney)..

 

He’s starting his 5th round of the Maintenance chemo, so for those who are keeping track, 3 Mri’s and 5 rounds of Maintenance chemo. The maintenance chemo will last through next May, then we will discuss what’s next.

 

Steve’s been back at work since April, and we took the boys to the Grand Canyon this June, and are doing a three  day Disney trip at the end of September.  Lots of family time, and our new normal. We are hoping we keep on this track.

 

Thanks to all for your love and support. Will update again Just before the holidays.

 

With love,

 

Terry

Routine Blood Work Results

Blood work from week three, before tomorrow's scheduled MRI, with blood taken on 9/11/12:
rbc 4.09
wbc 4.22
platelets 133,000
creatinine 1.2
Bun 20.5

The first three (red blood cells, white blood cells and platelets) are mostly effected by chemotherapy. When they get too far off, we're concerned about Steve's body having trouble with the chemo. Since these numbers are pretty close to normal, we're thinking Steve managed the last 250 mg chemo dose well. Dr Hu said the standard of care is 250 to 400 mg. We wonder if Steve's dose will increase again.

These lab numbers are usually the lowest at this time of the month, the third week of chemotherapy.
Steve has been feeling a little fatigued. Terry thinks the humidity they've been having is affecting Steve, since he feels tired, has a headache at the location of scar, and his scar feels tight.

Tomorrow is the bimonthly MRI. They are always a little scared before each MRI. We're sending out all our good thoughts and wishes in support of Steve. The MRI is scheduled for 6:45 am! It's a good thing they are early risers. Then they have an appointment with Dr. Hu at 10:00 when they hear the results from the MRI.

Next week is Nathan's fifteenth birthday! They will have a family dinner on Wednesday which includes celebrating Terry's Mom's birthday, too. Then Nathan will have his friends over on the weekend for a slumber party (or a Non-slumber party, as the case may be). Terry says she and Steve will stay upstairs, out of the way of the kids. They are so grown up now!

So, I was looking at the Temodar website. Does anyone wonder what this stuff looks like? There are all kinds of warnings about not opening the capsules or chewing them or getting the drug on your skin or mucous membranes. Yikes!

Suggested Capsule Combinations per Day  Number of Daily Capsules by Strength (mg)
2.0 m²	300mg		0
Capsules are not shown at actual size. The Suggested Capsule Combination, based on daily dose in adults, is determined from BSA calculated above.			0
			0
			3
			0
			0

Here's the Latest

Steve had another Dr. Hu appointment yesterday which went fine. Dr. Hu was pleased with Steve's latest lab results (as we thought he would be) and he raised the next dose of Temodar to 250 mg (as we thought he would). Something new Steve and Terry learned was the usual high dose of Temodar is in the 400s, not 250, so Steve will likely have regular increases to his dosing for a while. We don't know yet if the duration of chemo will extend beyond the a year to make up for these months of lower dosing but it seems likely and Terry will ask about that during their next appointment.

Steve's next chemotherapy round starts Tuesday night and goes through Saturday. He has blood drawn again on Monday to check his pre-chemo levels.

His next MRI is scheduled for Thursday, September 13 at 8:00 am followed by Dr. Hu at 10:00 am. Cedars Sinai is going all-electronic with their records on Friday so Steve couldn't get a Friday appointment. He will trade his days off from work to make the Thursday appointments.

Their boys started school last Thursday, Adam at Jr. High and Nathan in a heavy class schedule at high school. They have been making a point of spending time together on their days off. Their next is a museum trip for a Cleopatra exhibit soon.

Third Week Lab Work

Here's a quick update on Steve's health since he had his scheduled blood work done yesterday. This is the end of the third week after his last round of chemotherapy, the time when the chemotherapy drugs usually are at their most debilitating. Fortunately, Steve seems to be handling this well with good results. Some of his values, which are mostly normal:
rbc 4.32
wbc 6.2
platelets 152,000
creatinine  1.2 (the lowest in a while)
bun 15.4
The lab technician said the lab results were good for a chemotherapy patient.

Steve has been having headaches and recently been fatigued after work. He relaxes after work and stays quiet for the evening. This is his third round of chemotherapy and during his previous rounds his symptoms improved during his fourth week. We will hope so again. His weight is stable around 244 pounds. He doesn't have time to exercise during the week but he walks the dog on weekends.

His next appointment to see Dr. Hu is Friday. We expect the dose of Temodar will increase again since he is doing so well overall.

The kids start school in a few days. Time marches on.

Being Stable

Steve had his follow up appointment with the nephrologist today. All is stable with his creatinine value unchanged at the 1.5 level. Apparently normal values range from 0.7 to 1.3 so Steve is hanging out slightly high. The doctor said this is most likely going to be Steve's new normal value. Steve had some kidney damage from the first round of chemo and kidneys heal very slowly, so this is not going to change any time soon. The doctor is not too concerned and will only need to see Steve every few months for a check up. Steve's next appointment with nephrology is November 21st and Dr. Hu will send any relevant lab work he orders to their office in the interim.

Steve's last round of maintenance chemotherapy went well. Steve had no vomiting and only mild symptoms. Terry thinks it's likely Dr. Hu will increase Steve's dose of chemo for the next round. They are scheduled to meet with Dr. Hu on August 17th and will find out then.

Steve caught a cold from his kids recently and it acted like any regular cold with stuffiness, improving to loose phlegm. I'm pleased it didn't hit Steve harder than usual. His immune system must be working well for the cold to act normally. Go, Steve!

Otherwise, life goes on pretty well. The summer has flown by with the kids keeping busy in summer school and camp. They start school in just over a week and their family will get back into the new school and homework schedule. It's nice to have regular activities rather than medical problems dominating life.

Here Are Some Details

I have updated information from Terry on how Steve's medical status has been these last two weeks. He had several lab tests done to monitor his chemotherapy's effects on his body.  They were taken during his third and fourth weeks after his latest round of Temodar. Typically, chemo's effects are worse around week three.
               July 14th test             July 19th test
Creatinine         1.4                    1.3
Red blood cells   2.9                   3.83
White blood cells  2.7                4.3
Platelets          91,000                147,000

I learned from Terry that the creatinine level has to be below 1.3 in order for contrast dye to be given for MRIs. Apparently, two months ago, Steve's MRI was without contrast dye due to his high levels back then (when his kidney problem was newer). This time, since he hit the 1.3 mark, his Friday MRI was done with the contrast dye. I'm happy he had another negative scan result with the more detailed contrast procedure. Whoohoo!

By the way, Steve had a brief fainting spell before the MRI on July 20th when they were drawing blood AGAIN. He already had a hematoma in his arm from the day before and they were having trouble getting a vein. They poked and prodded him too many times. Combined with his general higher anxiety level wondering if the MRI was going to show new cancer or not, he did a quick fall over for a few seconds. They delayed his MRI for five minutes until he was back to normal and he's stayed upright since then.

Lucky Steve got to have blood drawn again on Monday to determine if he could start his next round of chemotherapy. It was scheduled to start on Tuesday. Terry just got a brief report from Dr. Hu's office which said his creatinine went up to 1.5 but that was expected as a side effect of the contrast dye from the MRI. He was given the go-ahead to start chemo on schedule last night. He is being kept at the lower 200 mg dose for another month because of his not-quite-normal lab values. The goal is 250 mg when his body can tolerate it.

Steve felt fine most of this month.  The worst he felt was during his third week when he was having his worst lab values. He had an upset stomach from eating dinner out one night which lasted until the next morning. His stomach seems to be more sensitive than it used to be. In general, he was managing on only one Zofran pill a day most of the time. During the five days of chemo, however, Steve is going back to three Zofran a day to help keep nausea under control.

He has been busy at work and is getting caught up in the stress of it. He hasn't missed any work and tries to do all his medical appointments in the evenings or during his alternating Friday's off. His next appointment is a check up with the nephrologist on August 8, then lab work the 13th and 20th, and an appointment with Dr. Hu on the seventeenth.

July's MRI Results

I had a quick phone call with Terry this afternoon. She and Steve had spent the day at the hospital for lab work, Steve's bimonthly MRI and his appointment with Dr. Hu.

Great News: No new cancer on the MRI!

That is always the worry and we are good for now.

Steve's blood work was down a little bit so Dr. Hu is keeping Steve at the 200 mg Temodar that he was on last month instead of raising the dosage. I didn't get the numbers from Terry because of background noise where I am but I will get them later and post them when I can (just in cast you are keeping track, hehe).

Yay, Steve!

Steve's Doing Great

Steve is about three weeks after his last round of chemotherapy and he is still doing well. He is feeling good enough to decrease his anti-nausea medication for the first time in ages to only one Zofran a day. Whoopee!

Next Friday is the next significant date. It's his next MRI scan which will look for the return of any tumor. It's an anxiety producing procedure because of the possibility of tumor recurrence. Fortunately, he sees Dr. Hu shortly afterwards and will have the results then. Everybody cross your fingers and send good karma out into the universe on Steve's behalf :)

Steve has a normal doctor appointment tomorrow just to ask about his knees and some aches and pains. Steve thinks it's because he turned fifty this year. It's all down hill from here, Steve!

Second Round of Chemo Ends

Steve has just finished his second round of maintenance chemotherapy at the 200 mg dose. He has done well overall, considering he's taking very strong drugs. He has some quesiness and stomach upset, usually in the evenings.  As he has learned these last months, he takes Zofran 3 times a day. He has a new anti-nausea medication I haven't heard of called Amend. He has it available but hasn't used it yet because he is reluctant to take pills. At least he can keep it in his back pocket, so to speak. To offset constipation side effects, he continues to take Miralax every other day and drink prune juice often.

Steve's last blood test was taken Friday. He keeps getting closer to normal. Creatinine is 1.3 and platelets 143,000. His weight is stable at 244 to 245 pounds, the same as when he got married all those years ago.

The next plan is for an MRI on July 20th with his next blood work scheduled a few days before.

The family trip to the Grand Canyon was a success. They rode the train, watched a wild west show, and hiked several miles along the rim. It sounded perfect.

Good Doctor's Appointments This Week

Steve and Terry went to the nephrologist's and to Dr. Hu's appointment today. They called me with the good results. Both doctors were very happy and Terry used the word "ecstatic" to describe how the doctors thought Steve was. Some of the details:
Steve's creatinine level is now 1.5 and finally borderline normal. They are aiming for 1.0 like last February's lab value for a goal. The next nephrologist appointment is in two months.
Blood platelets are now 123,000 (normal levels are 150,000 to 450,000), but this is expected due to Steve's recent chemotherapy.
As usual, Steve's neuro exam perfect.
Because Steve did well on his first, lower dose of maintenance chemotherapy, his next Temodar  dose will increase to 200 mg. This one starts on June 26th for five days.
The plan for maintenance chemo is for 12 monthly cycles. That's the five days of chemo and twenty-three rest days.
His next MRI will be July 20th.

Both doctors said Steve was doing fantastic, "that was their word, fantastic". Yeah! Because the glioblastoma diagnosis is so awful, there is no remission. However, Dr. Hu said "we don't anticipate cancer at this time" which will have to suffice.
Steve continues to feel well. He  had a rare sugar treat just before we talked and he was basking in the flavor.

Adam graduated elementary school.  Steve attended the ceremony :)

They have a family vacation coming up to the Grand Canyon. Whoopee!

No Chemo Side Effects

We are now a week and a half after chemotherapy and all is well. Steve is still feeling pretty well, similarly to before the maintenance chemo. His BP is back to normal, as it had been marginally high before and now the Norvasc is doing it's job without stressing the kidneys. He continues to push fluids as his kidneys slowly improve. His next check is coming up Friday when he has his next appointment with Dr. Hu.

He no longer is losing weight and is stable at 244 pounds. He is still taking Zofran (back to twice a day), prune juice and meds to prevent nausea and constipation. He is eating well with some occasional stomach upset. He tried some Mexican food but couldn't eat it without nausea.

The next week or two will be when chemo symptoms typically occur, if he is going to have any on this lower maintenance dose.

Summer is here and they are looking forward to a short family trip to the Grand Canyon. I hope they get some great photos.

Maintenance Chemotherapy Update

Today is day five of maintenance chemotherapy and Steve is doing fine. He has not had any new problems or side effects from the Temodar and he has continued his normal work and activity  schedule. He did increase his Zofran to three a day (two pills at night, half an hour before his chemo pill, and then one mid-day the next day) just to be sure and it seems to be effective.

We know the Temodar takes time build up in one's system and so it takes time to see any side effects. We heard most folks feel the worst around week two after the chemo. We'll see how Steve fares. He is on a lower dose than before and it's only five days, so we are hoping for the best.

They are looking forward this summer to a planned trip to the Grand Canyon, the kid's first time there. I hope Steve continues to feel well so he will have energy to really enjoy himself and the family. Adam's birthday is coming up. They are planning a pizza party Tuesday for group of Adam's friends with confetti cupcakes and, on the weekend, they will have a  family dinner in his honor. I'm thankful that Steve is feeling good and enjoying these days.

Tonight Starts Chemotherapy Again

Time flies when you're having fun and Steve's break from treatment is now officially over. Tonight, he takes his first maintenance dose of Temodar of 140 mg. He will take his anti-nausea medication a half an hour before and he is being very dutiful with his fiber pills, prune juice and other medications for constipation in an attempt to minimize any unwanted side effects from the chemotherapy drug. He will take one Temodar pill in the evening for five evenings and then stop for twenty-three days. We wish him well and hope nothing will keep him from work or from feeling good enough to love life.

He had his blood drawn again the end of last week with a slow improvement in his kidney function. His creatinine is down from 1.8 to 1.7, on it's way towards a normal 1.5 and much improved from numbers over two. He is still drinking lots of fluids and he sees the nephrologist about June 15 for his next appointment.

He hasn't been able to completely stop the anti-nausea pills despite not having had any active treatment for a while. We don't know if it is the residual from radiation, chemotherapy, kidney failure or battling constipation or a combination of the above, but he would have an upset, gassy-feeling when he tried to stop his Zofran previously. We hope he won't become more nauseated with the Temodar because the anti-nausea pills really cause constipation, which causes a very upset stomach. It's a vicious cycle. What can you do?

On a happier front, Adam turns 12 years old next week and is graduating elementary school. The kids grow ever bigger at a rapid pace!

Maintenance Chemotherapy Scheduled

They had another appointment with Dr. Hu today and maintenance chemotherapy is now scheduled for May 28th, barring unforeseen problems with the next lab test on May 22nd. Maintenance chemo will involve 140 mg of Temodar a day for five days, followed by 23 days off. The number of rounds is not yet known, but we understand some people stay on this type of schedule for years. The 140 is a lower dose than the 180 Steve took daily for six weeks before and it is lower than the standard maintenance dose. If he tolerates it well, they will increase the dose for the next round. They are starting with the lower dose because Steve had so much nausea and kidney and platelet involvement before, they are trying to keep the maintenance schedule from being so hard on him.

In anticipation of Steve's body's reactions to the chemo, they have a plan to help. He is going to double the Zofran and resume Compazine and add a third anti-nausea medication (Terry didn't remember the name during our conversation).  Then because all of this causes bad constipation, Steve will also be increasing his medications and fiber to try to help that end of things.

Terry had a list of questions to ask Dr. Hu about clinical trials that might help Steve fight this battle. Dr. Hu explained that there currently are not any trials accepting patients in his situation.... either they are full or are not for his stage of treatment. There are several trials for when the tumor recurs since, unfortunately, they almost always recur. They discussed one trial at USC (boo, hisss because it's rival to our UCLA, hehe) that is for glioblastoma tumors with a specific genetic makeup, called epidermal growth factor variant 111. They plan to send 4 microns of Steve's tumor to USC to see if it is one of the 30% of tumors with this EDGFv111. If Steve's tumor has this makeup then he can participate in the trial whenever he has a new tumor growth discovered. It's planning ahead just in case it's needed and his tumor qualifies. For any of you interested: http://clinicaltrials.gov/ct2/show/NCT01498328?term=usc+and+gbm&rank=5

Steve seems to be doing well and feeling good. He still takes Zofran twice a day because of nausea and also has to take 200 mg Colace and 3 Citricel tables twice a day to help keep his system moving. He continues to work full time and he has resumed some family activities like driving the boys to their friends' houses. He's still not 100% due to some fatigue but he's glad to be able to be involved again.  Let's hope the maintenance chemo doesn't knock him back much.

Nearly Normal

This just in from Terry via Facebook:


Hi....Good news, steve's creatinine continues to fall...results from friday's bloodwork...1.8 YEAH!!!!!!!! Have a llovely day! 


Whoopee!

My Pleasant Weekend

I spent the weekend visiting Steve and his family. Steve was feeling well and we had a lovely, quiet weekend at his home.

In the backyard on a sunny Sunday morning,  May 6, 2012

Lesley joins us for dinner, Cinco de Mayo, 2012

Relaxing after dinner. I love the Mickey pirate shirt.

Walking on his treadmill both mornings I was there for fifteen minutes, twice.

Happy family in the backyard.

Healing at a Turtle's Pace

Steve and Terry went to the nephrologist's tonight to get the results of Steve's tests. They received good news and are doing happy dances as I type. Steve's 24 hour urine test and kidney ultrasound were fine and normal. Measures of Vitamin D and parathyroid functions were also normal.

They said Steve has Acute Tubular Necrosis, also called ATN, which is a problem with the small tubular structures inside the kidney (it is a precursor to acute renal failure). They were collapsing because of the chemo and dehydration and it is expected to only be temporary. Dr. Ayuste talked to Dr. Hu and discovered Steve had been sick longer than he originally thought, for the greater part of the eight weeks prior to their meeting, not just the last week of chemotherapy. That accounts for the slower recovery than he originally expected.

Kidney function is related to blood pressure. Dr. Ayuste took Steve off his Losartin medication back when this kidney problem started. Today, Steve's BP was slightly elevated at 160/97 (of course, he was stressed at the doctor's office and had just rushed there after a nine hour work day). He is starting Steve on Norvasc instead of Losartin to lower blood pressure since it is more gentle on the kidneys.  Terry has to buy a blood pressure cuff and check Steve's BP regularly while they adjust the dosage.  They don't have to see Dr. Ayuste for six more weeks. They already have lab work done every two weeks for Dr. Hu and a copy of the results will be sent to Dr. Ayuste so he can continue to monitor Steve's labs.

Constipation continues to be a problem. Apparently, it is a side effect of anti-nausea medications as well as the previous chemo itself.  Steve has continued taking the Zofran to help settle his stomach. He has other medications to help mediate the symptoms but it has not been enough. They have telephoned Dr. Hu and Dr. Cox at different times to help find something that works and they have doubled the dose of Colace recently. They also have to change from Citracel to Metamucil and he has Miralax available. They all work in slightly different ways to achieve the same end results :) Dr. Ayuste suggested they ask Dr. Cox about using Reglan instead of Zofran to see if it works on the nausea with fewer side effects. When I read about Reglan online, however, I see some pretty serious side effects (tremors and involuntary muscle movements) that seem much worse than constipation. We will see what Dr. Cox says.

Speaking of nausea.... Steve still is losing weight. The last I reported, I believe he weighed 257. That was monumental as the first time he reached the 250's since he was young. But, he told me he is now down to 247 pounds. That's just unheard of for my little brother. We're going to have to bulk him up with some muscles and enticing food. Wish us luck.

Steve's next appointment is May 18th with Dr. Hu with blood work scheduled several days before. Let's hope for some nice, lower kidney numbers.

Terrific MRI Results!

Terry called me while Steve was driving them home from their appointment with Dr. Hu this afternoon. They have terrific news: the results of the MRI were the best they could have hoped for. There is no sign of tumor or cancer cells and the area of swelling has decreased. The old tumor area has shrunk grossly by about a third compared to their older scans. They are very happy!

More good news.... Steve had blood work last Friday and his creatinine level improved from 2.7 to 2.5, AND blood work from two days ago showed even more improvement at 2.4. He may be a bit slow healing, but I'm glad he is finally moving in the right direction. BUN levels are now on the low side at 8. Platelets are near normal at 142,000, Yea!

The results of all this good news: there is no hurry to start the maintenance chemotherapy. They will give Steve's kidneys a little more time to heal. They see Dr. Hu in two weeks and will decide when to start the chemo after then. Steve can also have his teeth cleaned now that his radiation is done.

Earlier this week Steve turned in his 24 hour urine collection and then Wednesday had his kidney ultrasound. He doesn't get the results of those tests until he sees Dr. Ayuste, the nephrologist, next Wednesday. His next blood test isn't for another week and a half.

Steve says work continues to go well but he still feels fatigued at night. Terry stays busy with the boys and taking care of them all.

Acute Renal Failure

I haven't talked to Steve or Terry for a while until this evening. Steve has continued to work full time and he is doing well at work and feeling all right overall. He still doesn't have much appetite and eats lightly. He says most food just doesn't interest him. He says the constipation has been a persistent problem and even though his nausea is better, he still has some upset stomach. Dr. Cox says it's likely a combination of the leftover chemo, the kidney problem and the constipation causing the upset stomach.

Yesterday, Steve had more blood work done and he talked to Dr. Cox and the nephrologist today. The good news: blood platelets are approaching normal at 111,000 and much improved. Also, his BUN levels improved and are at the high end of normal at 20. The bad news: his creatinine levels have not improved at 2.7, indicating his kidneys still are not functioning fully. The nephrologist thought they should be close to normal by now if the problem was dehydration from the prior nausea. So, he wants to check out Steve's kidneys more closely to see why they are still impaired. Steve is to do a 24 hour urine test and he is scheduled next Wednesday for an ultrasound, plus more blood tests. When pushed, the nephrologist said Steve has acute renal failure (acute means sudden onset, renal means kidneys) but he doesn't know why yet. We hope the tests next week will tell him more.

In the meantime, Steve is in a funk after hearing today's news. He is sick and tired of tests and appointments. He just wants to concentrate on life, work and family and all this about his kidneys is getting in the way. Recently, Lesley and I were sending e-mails about glioblastoma multiforme survivor stories and most of them talked about how helpful support groups had been to them. I suggested Steve might find a support group helpful because this business of being sick (and terminally so) is too much to handle alone. Even though all of us love him and want to help, there is only so much we can know about what he is going through. I wonder if Cedars Sinai or UCLA has a group. We'll have to investigate further.

The MRI scheduled for Friday has been postponed a week. Steve has every other Friday off of work and he was scheduled to work this Friday. He's off work next week so he will have his MRI and see Dr. Hu then.

Kidneys are Slowly Stabilizing

Steve and Terry dealt with more lab work today. Terry was following up with the doctors about last week's creatinine level and they asked for another blood draw today to check it all out. So, after work this evening Steve had more blood taken which they treated as "stat" in order to get the results tonight. There had been some talk about possibly needing another hospital stay if the kidney results worsened and Steve didn't like the sound of that! The good news, his kidney numbers have stabilized with the creatinine at 2.7 and BUN down from 24 to 23 indicating a tread towards normal. He is still drinking a ton of water every day. His platelet levels were much improved at 94,000 and are getting closer towards normal, too. He is scheduled for another blood check next week to continue monitoring him.

Work is going well and Steve says he has enough energy to get through a day's work. He notices that he is weaker with his skinny stick legs and arms and he gets winded at the top of a flight of stairs. He says he doesn't notice any problems with language or thinking, he just felt rusty and needed reminding of some  of the newer engineer's names last week.

We are approaching the April 20th MRI and subsequent maintenance chemotherapy. The doctors are watching Steve's kidney function closely because of the expected stress of the upcoming chemo.

Platelets Rising

Steve has the results from his latest lab work with good news on his platelet count and not on his creatinine count: platelets rose to 59,000, closer to normal and showing signs that his bone marrow is recovering from the chemotherapy; creatinine also rose to 2.7 indicating his kidneys are still not functioning fully, despite Steve's continuously drinking fluids. They wanted to discuss the kidney numbers with their nephrologist but he is out of the office until Wednesday, so we don't know what to make of the numbers yet.

Steve finished his first week of work in better shape than Terry or I thought he might. His level of fatigue was quite manageable as long as he rested after work. His upset stomach increased by the end of the week but was mostly controlled with his medications. Overall, he had a great starting week.

I was concerned about any damage to Steve's brain, particularly near the language center, which likely resulted from the tumor, the surgery or the radiation treatment. When he was home, his brain didn't have to work as hard or try to make as many connections as it does at work. I thought he might discover some limitations in his language abilities when working with complex problems at work. Steve acknowledged that he had forgotten some things and has had some small language issues but all he had to do was ask questions and his colleagues helped him out. I'm glad it has not been a problem for him. The brain is good at building new neural pathways and will make new connections to process and retrieve language with exercise. He just has to keep stimulating his brain and I doubt any of us will notice a problem in the future.

Hopefully, Steve will have a quiet couple of weeks leading up to his April 20th MRI and subsequent round of maintenance chemotherapy. Easter is tomorrow and they will have family over for a nice dinner.

Happy Easter and Passover, everyone.

Still Not Normal

Steve had blood drawn on Friday and just received the results: he's not normal yet. (Gak!!)

Blood platelets are created in your bone marrow and are rapidly dividing cells which are particularly susceptible to chemotherapy drugs. Platelets are part of your blood clotting system. Steve's level has continued to drop down from 46,000 to 39,000 making him more likely to bruise or bleed. Dr. Hu says it is part of the after-effects from the chemo and they will continue to monitor it. He is scheduled for another check on Thursday. When you have low platelets you are said to have thrombocytopenia. That's why the doctors get paid the big bucks, because they have long, latin-type words for things.

Creatinine numbers remained at their high level, the same as last week, indicating Steve's kidneys are still damaged. Terry was hoping they would improve this week and was disappointed in the results. I was expecting to hear from Terry today after she talked to the nephrologist but I couldn't reach her. I'll update you as I receive information.

As of yesterday, Steve worked his second day back to work, a nine hour day, and felt a little tired but he was still happy to be working. Today was his day to drive the carpool so I hope he had enough energy at the end of the day to stay safe and not over-tire himself.

First Day Back to Work

Steve is happy. He returned to work today for the first time since the middle of November about four and a half months ago. I was worried he would get over tired and stress his body trying to keep up with all the activity, but he said it was all right and he was just a little tired overall by the mid-afternoon.

He had carpooled, as was his custom with Scott and Keith, so he was gone from 6:30 am until 6:00 pm. He is still not eating much and took a short mid-morning break to eat a granola bar, then had a light lunch, then a half a sandwich mid-afternoon. He didn't need to lie down to rest. For any of you who don't know, Steve works at computers most of the time and so is not usually physically taxed. This morning he had to check in with the company physician before he could start and Steve said it was just a quick stop as a formality. Then he spent most of the day re-setting passwords and catching up on four months of e-mails and missed work. He said he enjoyed seeing his friends and colleagues again who flocked in to see him and let him know they were happy to see him back at work. He is looking forward to getting into the gist of his work and contributing to his projects again.

As far as nausea goes, he says it gets worse as the day goes on. When I talked to him at 8:30 tonight, he was lying on the couch rubbing his tummy. He says it stays that way until he goes to bed and then is better when he wakes up. He has cut out one of his anti-nausea pills and has decreased the frequency of the other from three times a day to twice a day. He had tried to boost his activity in preparation for starting work by increasing time on the treadmill and felt fine doing so. I found it interesting that Steve couldn't say the word "treadmill" when we were talking.... reminiscent of his original symptom some months ago. I attributed it to being tired after using his brain all day today. I hope it is just a fluke or a "nothing" that just happens to all of us sometimes. I will be curious as he gets stressed and tired from work if it will be more noticeable.

Yea, Steve! Way to go and congratulations on the milestone of returning to work!

The Nephrologist

Another day, another doctor....

Today, it was the nephrologist, also known as a kidney doctor. His name is Dr. Brian Ayuste and he is in a medical office building not too far from home. Terry and Steve liked him. They said he agreed with Dr. Cox about the kidney problems being a result of the chemotherapy and dehydration and that Steve's kidneys should heal. Steve was ordered to drink 6 bottles of water a day for three days to combat the residual effects of dehydration. He has lab work to be done on Friday and then two weeks later he has a follow up appointment. Lab work will include a urine test to check for protein, plus blood work to check sodium, creatinine, ck (creatine kinase) and uric acid levels. Uric acid is a by-product when cells break down and is expected to be elevated after chemotherapy.

Dr. Ayuste took Steve off two pills, Lesarten and Simvastatin. Steve took Lesarten for blood pressure because of the diabetes medication, Actos, and the Simvastatin is a cholesterol lowering drug. Those pills affect the kidney's filtering function somehow and can be safely stopped temporarily without any side effects. He wants the kidneys unencumbered by extra filtering until they get working normally.

They will follow up regularly and reassess what needs to be adjusted in the future because the maintenance chemotherapy may continue to stress Steve's system.

The good news, Steve may still return to work on Monday if he feels up to it. Terry said he felt better today and only needed one Prilosec instead of two to help with his upset stomach.  He might make it back on schedule after all.

Currently Stable

The results from this morning's lab work showed that Steve was currently stable with no big change in his kidney numbers from yesterday. His kidneys have some damage from the chemotherapy, about 50% from normal, but apparently the doctors don't get worried until you get down to 15% of normal. As a precaution, however, Steve gets to see a kidney specialist tomorrow, a nephrologist somewhere near them so they don't have to drive downtown. Steve is a bit concerned about all of this because he has been looking forward to returning to work on Monday and he hopes this won't postpone it.

He has been taking the anti-nausea pills regularly because of a general stomach upset. He eats small meals or snacks throughout the day and has kept them down. He drank lots of bottled water and black tea yesterday and will try to keep drinking a lot like he is supposed to do.

Thursday, they recheck his blood work and will check his platelet levels again (they didn't check it this morning). More good things to look forward to :)

More Needles

Well, this morning Steve and Terry went to see Dr. Cox. Lucky Steve got to give some more blood and wait for the results for about 20 to 30 minutes. The results showed a slightly higher number for creatinine level (2.3) which indicates he is dehydrated still and his kidneys are having some trouble. His platelet count was essentially the same at 47,000.

What do doctors like to do for high creatinine/dehydration? Give IV's! Steve loves getting poked and having needles (NOT!) So, between about 8:30 and 2:00 this afternoon, Steve received two bags of IV fluids. He's probably running to the bathroom to empty his bladder right now. Tomorrow he gets to go back and have his blood taken again to see what changes happened. He's also supposed to drink more fluids tonight. Hopefully his levels will be good in the morning and he won't need any more IV's.

Blood platelets help clotting. Steve's level is quite low, but not as low as 20,000 needed for a transfusion. Terry talked to Dr. Hu today about the blood test results. Dr. Hu told them no green tea, garlic or red wine and no shaving with a regular razor blade. They had to get an electric razor this afternoon. There also will be no contact sports. And NO bungee jumping.

Still Having Nausea

Perhaps it was too much to expect the end of chemo and radiation to go smoothly.....

Steve had two pretty good days. Friday, the last day of radiation, Terry and he went out to lunch and Steve ate some pizza. He also had a light dinner. We saw him Saturday morning and he looked great. He ate a yogurt for breakfast and had some energy. Terry said he was tired later in the day but he ate some dinner. He hadn't taken any pills except his diabetes pills since Dr. Hu's permission to stop them.

Sunday went not so well. He threw up his juice before breakfast, then again after lunch. Then twice after his half a sandwich for dinner. He initially didn't want to take any anti-nausea medications, thinking he would feel better and it would pass, but Terry made him take the pills when it didn't stop.

They are scheduled to see Dr. Cox tomorrow morning. I hope he stays well enough to make it through tonight until then. I suppose it's only the residual from his cancer treatment and not anything else, like from the platelets being low or his creatinine levels being high. We'll find out tomorrow, I suppose.

Feeling Better

Now that the chemotherapy and radiation have ended, Steve is able to eat again.  He is already eating small meals and his energy level is much improved. Yesterday, they went to  Dr. Hu's and had a positive meeting. Steve was cleared to go back to work on April 2nd with the stipulation that he be allowed to rest when needed. Dr. Hu is monitoring his blood work as the platelet levels dropped from the chemotherapy. He took more blood work Friday and called this morning to let them know the platelet level dropped again to the 46,000 level and his creatinine levels were off. They need to see their primary doctor, Dr. Cox on Monday to check again and drink plenty of fluids in the meantime. Steve is able to drink  now, since the nausea is gone. He couldn't in the last week since even a little fluid sent him off the the bathroom to throw up. We expect his blood work to return back to normal because he is off the chemo and because he can eat and drink normally again.

The schedule for the next round of care is a MRI April 20th. There is a 50/50 chance of getting a false positive reading for a tumor left over from the symptoms of the radiation, which causes swelling. After that, Steve will have two rounds of maintenance chemotherapy:  two cycles of 5 days of pills followed by 23 days off for 2 months; then another MRI. Then they reassess how often those cycles are repeated based on the findings. The dose of the chemo will be higher for the 5 days than the dose he just finished. We will see how that effects him.

His last radiation was Friday morning. FREEDOM!! They gave him a certificate of completion and a pretty bunch of daffodils to celebrate. The last week's dose of radiation was called Boost, which focused only on the area of the tumor (not the 2 cm around it).

Plans for this next week will start to normalize with taxes to be done and Spring Break for their boys. Steve will do whatever he wants! He will eat and exercise (he was already on the treadmill this morning) and start to have fun. Good times again.

Here Comes the Light at the End of the Tunnel

This week kept getting worse for Steve as the effects of his radiation and chemotherapy accumulated. By Wednesday, he threw up three times. His weight was 256, down 48 pounds from the start. He also had routine blood work done which showed his platelets on the low side. The normal low number is 100,000 and Steve's was 86,000. It's expected to drop due to the chemotherapy, but.... now the good news, are you ready for it?..... Dr. Hu said Steve could stop the chemotherapy yesterday!! Mostly because his lab values were low but also because he's feeling poorly. And it only cuts him short by a few pills.

Whoopee!! Intensive chemotherapy is now officially over! Now, there is still maintenance chemotherapy to complete but that's another story. Tomorrow, Steve and Terry go to Dr. Hu's office and expect to receive all the details about maintenance and the follow-up MRI's. Tomorrow morning is also Steve's last day of scheduled radiation therapy so by about eleven o'clock the whole kit and caboodle will be over.

Party Time! Haha! (except Steve is too tired to party yet. We'll take a raincheck on that party and celebrate quietly for now.)

Terry's March 20th E-Mail

Many of you received this in your inbox a few days ago. I wanted to post it for any of you out there who missed it. It shows another side of the effects of this serious illness, that is, how it impacts Steve's psyche. The "missing plug in" was a big happy face. I don't know how to make it show up here:

Subject: Rough road to the end of Phase One

Hi everyone,  my apologies for the delay.....To say the last two weeks have been a rough road would be putting it mildly...  We were aware this last stretch would be the most difficult, but I guess at least the radiation will be over in 3 days ,and daily chemo in five.  light at end of tunnel, right? Constant nausea, occasional vomiting, and overwhelming fatigue, are the physical side effects, but what this does to a man’s ego, is just as hard.

We go to the Dr. on Friday, and discuss a well earned month reprieve from treatment, then it slows significantly to 5 chemo pills every 28 days, and bimonthly MRI’s for a year. the 1st after the month off.

The boys have been busy with school and performing, I can’t help thinking of Mom (Shirley) sitting up in Heaven smiling with pride at Nathan’s solo in his March 8th concert, or Dad & Daddy bursting out in laughter as Adam dances across the stage dressed in a Tootsie Roll costume... :-D  We miss them all!!!!

Steven hopes to return to work in early April, which will help him feel better....He loves what he does, and Lockheed has been amazing wonderful through all of this, his Co-workers,and  bosses, have supported Steven & I immensely through this whole adventure.

We are very blessed to have our family, and friends in our lives as well. You all have helped me keep my sanity in check....

 We can’t ever thank you enough!!!!!!!!!!!!!!!!!!!!!!!!!!

All my Love, and God Bless

Terry

From Crummy to Crummier

I talked to Steve this morning. Terry had called to let me know that Steve's been doing worse since we last spoke three days ago. Steve didn't sound too bad, he still had some energy in his voice, but it was only about ten o'clock which is his best time of day. He said his attention span has decreased with his fatigue. He told me a sad story... he received a video game for Christmas he wanted, Mass Affect 3, and he can't play it for more than a half an hour before he's too tired to continue.  He says it's surreal that he's not wanting to play it a lot, that it's not at all like him. And he doesn't watch movies much because he gets too tired to finish watching them.  And food commercials only make him feel nauseated where he used to desire the pretty food. Isn't that pitiful?

He continues to lose a pound a day. He ate a yogurt this morning and then threw it up. He ate an english muffin last night for dinner. He snacks on handfuls of nuts. He's a nutty kind of guy :) He's now eating high calorie foods like full fat milk and yogurt, just not very much of it. He says when he drinks a glass of milk, the glass size would fit in a little bathroom Dixie cup, just a few ounces at a time. His weight is now in the 250's. He hasn't weighed so little since he was in his twenties. Some years ago, when he went on Weight Watchers his goal weight was 263. He said he blew past that weight in no time.

Terry called Dr. Hu on Thursday since the nausea and excess saliva were so bad. Dr. Hu added a Trans-derm Scope patch, like for sea sickness, which goes behind Steve's ear. It's supposed to last three days but it has to be removed for the radiation treatments. Terry saved the plastic it came on and then had Steve put it back on after Friday's radiation. He took it the first night along with his antihistamine pill and it helped but only so-so since then. Unfortunately, it didn't help enough this morning since he couldn't keep down his breakfast.

Since Steve is eating so little his blood sugar levels are good. He is only taking three Actos pills a day, compared to his prior level of Actos plus four Glipizides a day. With the pills, his morning blood sugar levels range between 120 - 150. That's one small good thing.

Adam has three performances of his Willy Wonka school play where he is wearing a Tootsie Roll costume. Terry is only going to the one matinee so she can stay home with Steve longer.  Adam is learning to grow up and be independent for his other performances.  Another little good thing, I suppose... Sigh....

Exhausted All the Time

The effects of radiation and chemotherapy are accumulating with a huge increase in fatigue and some increase in nausea. Steve is too tired to do much now. He naps often during the day and goes to bed early at night. He finds it an effort to sit at his desk to use the computer and stopped driving the boys to school in the morning this week. He was too tired to attend Nathan's choir concert last week. Adam's play is this weekend and Terry has a ticket for Steve but he doesn't feel well enough to go, even to the four o'clock matinee. He did walk ten minutes on the treadmill today, but that was all, aside from going to radiation, that is.

Steve's weight continues to drop. He lost seven pounds last week, down forty-four pounds from the start. His nausea continues, even with Prilosec, Zofran and Compazine he has had dry heaves every other day lately. Obviously he's not eating much and constipation is a problem. Terry says he has skinny little stick legs but still has his belly.

Too tired to eat. How does that happen?

Seven days left of radiation, only a week and a half. The chemo will end shortly thereafter based on what  Dr. Hu says that last day, March 23rd. They are counting the days.

Working Drugs

Just a quick update.....

Steve's new drugs of prescription strength Prilosec and Compazine are helping with the nausea and upset stomach. Terry called tonight to let me know Steve is feeling better since he got his new medications from Dr. Hu late Friday. He ate a full meal of salad with chicken and rolls for dinner AND he walked ten minutes on the treadmill for the first time in a while.

Also his hair starting falling out more. Yikes! He hasn't had it cut for a while so it's longer than usual. I think he should keep it long so he can do a comb-over like bald guys do, hehe, except Terry says he's getting it cut tomorrow.

And Nathan was selected to sing a solo in his school concert this Thursday. Yea, Nathan!

Oomphless

Steve and Terry saw Dr. Hu yesterday as scheduled. Terry called me this morning with how the last week went and with a medication update:

Steve's nausea and fatigue have progressively worsened. He has very little energy and has stopped all unnecessary activity. He is constantly nauseated but mostly keeps his food down. Eating small, frequent meals is best. Crackers and low-sugar apple juice have become his best friend.  He lost two pounds this week. He still has excess saliva and acid reflex which contribute to the nausea and he has antihistamine to take when he needs to dry him up, but Steve has gotten tired of taking pills and doesn't take this one as often as his symptoms might warrant. Dr. Hu added prescription strength Prilosec (40mg) to help settle his stomach (in addition to the Maalox). He also added 10mg Compazine, three times a day to be taken with the Zofran to help control the nausea. Steve had lab tests done on his blood and all was as expected.

Steve continues with Monday thru Friday radiation in the mornings. I asked about how big an area the radiation covers. It is aimed at the location of the original tumor plus two centimeters around it. Steve now has a special, metal-free lotion, Radiaguard, to apply to his scalp because of skin redness. Terry rubs it in after the radiation treatment and before bed. She says his skin has been getting flakey and this helps. She's careful around the scar from the surgery.  It's now scabbing and starting to fall off, and his hair is starting to thin. Not big amounts, but she notices it, especially around the areas where the radiation machine aims.
I wonder if Steve will end up bald. Wouldn't that be a funny sight?

They are now half way through the chemo/radiation schedule. The last day is March 23rd, unless they tack on the two pills Steve missed earlier to the end.

Steve's job has been taking the boys to school in the mornings. He enjoys doing it and he mostly has enough energy in the morning. Then they go to radiation and Steve gets tired after that. He has not exercised for a while now. He lies around, resting, watching TV, reading his Kindle or the computer and checking e-mail. Their younger son has a school concert next week Steve is hoping to attend. Adam is a tootsie roll in a Willy Wonka style play. How cute is that? Their older son has a concert at Disneyland two weeks afterwards, but they're not planning on seeing that one because it would be too exhausting for Steve. Isn't that sad?

For those of you who know Terry, she received accolades from the boys elementary school for her years of service as a volunteer. She was honored at an award ceremony Tuesday as Volunteer of the Year. I know it was well deserved. She also had a brief scare after a mammogram this week and had to have an ultrasound to confirm she did not have breast cancer. Fortunately, her doctors expedited the process so she didn't have to worry too long before she received her negative results. She has been a trooper helping Steve and supporting her whole family. I'm glad that scare didn't trouble her for any longer.

Tolerating Chemo Better This Week

I finally have info to relay to you all after not talking to Terry for several days. I've been wondering how Steve's been doing since he restarted chemo on Friday. If you remember, Steve originally started his first chemo pill on a Sunday night. He took three doses before the nausea and vomiting had him stopping for two days for his body to adjust to it. Then he began again Friday and has taken it daily for the last five days. He is now handling chemotherapy better and has had no vomiting. The nausea is controlled with Zofran pills three times a day. He also is taking Benedryl to help dry up the excessive saliva that has plagued him and Maalox to help coat his stomach. He tried Prilosec but didn't have good success with it settling his stomach so he is trying the Maalox instead.

He is eating better than last week. Terry reports he is tolerating three small meals a day. She says his serving sizes are much smaller than they used to be, but he eats things like yogurt, salads, muffins and chicken pot pie and Chinese food one night. His weight is down 34 pounds from when this started so his family doctor just eliminated his Glipizide, diabetes pills. They were checking his blood sugar three times a day for a week or so while trying to determine his best treatment plan. Steve still takes Actos once a day and checks his blood sugar level once a day and they will continue to watch for changes as his diet and weight fluctuates.

He reports being pretty tired from all of this chemo and radiation. He takes a nap in the afternoon and is now sleeping through the night, usually 9 pm to around 5 am, without any sleeping pills needed. He tries to walk on the treadmill but has only been on it every other day this week.

Terry says the radiation is starting to cause redness on the skin, like a sunburn. This was expected. They were also told he may lose his hair but it hasn't happened yet. Mostly we make jokes about our favorite bald headed men, except I only know ones from the olden days and Terry had to educate me on who is currently fashionably bald (a Billy somebody from Smashing Pumpkins... how do you know these things?).

I'm glad it's going better this week. Terry says they are often changing Steve's medications and she is frequently updating his drug list (she has to show it at doctor's visits) and they are just taking it one symptom at a time, one day at a time. They are keeping a quiet lifestyle for now and not venturing out much. They are skipping a family event in the Bay Area in two weeks which is a good plan, I think. It wouldn't do to get overtired. We don't want any complications. Steve loves hearing from his friends. A quick card or e-mail is always welcome.

Similar but Different

This morning's news featured the death of Gary Carter, famous baseball player and Hall of Famer from brain cancer at age 57. I checked a few sites and it looks like he and Steve both had glioblastoma multiforme,  grade 4, but Gary's was inoperable for some reason. I don't know why. Apparently they tried treatment to shrink the tumor.  New tumors formed, one site said he had four. He lived about nine months after his diagnosis.

I think it's safe to say that Steve's prognosis is very different from Gary Carter's because of the success Steve had with surgery. Our sympathy to the Carter family.

Another Day Off Chemo

This morning Steve's blood sugar level was low at 60 because he didn't eat last night. Terry withhild Steve's diabetes pill and then she called their internist. He is having Steve take one pill instead of two as an overall change plus taking more frequent fingersticks and adjusting his two diabetes medications based on those levels.

Dr. Hu is giving Steve another day off from his chemo pill in order to help control the nausea. Apparently missing two doses isn't a big deal. Dr. Hu reassured Terry it happens all the time as they adjust doses to the patient's tolerance. It certainly helped today as Steve felt well enough to eat three small meals (is half a chicken sandwich a meal? That's not very much food.) and kept them all down. Terry said he has been really tired though and he took a nap which is unusual for him. Steve thinks the radiation might be contributing to the nausea also so he is planning on taking his Zofran regularly twice a day, before radiation and later before the chemo pill. He's allowed to take it a third time if needed.

Happily, Steve got to visit with his long time best buddy, Jeff who is visiting from back east this week and cheered them up. I bet it was a welcome distraction.

Chemo: Not Going As Smoothly As We Hoped

Temodar is the chemotherapy drug of choice for brain tumors and is generally well tolerated compared to some other chemotherapy drugs. It's biggest side effect is nausea and vomiting with only 4% of people experiencing severe symptoms. Steve is on a relatively high dose of it at 180 mg based on his height and weight. He takes an anti-nausea pill before the Temodar. Terry said the first days went well with no side effects..... until after his second dose. Tuesday, Valentine's Day, when I talked to them at 7:00 PM, Steve had been nauseated most of the day and had only eaten a yogurt and an english muffin all day. He was also generating an excess amount of saliva which probably contributed to his upset stomach. He felt more tired than before and didn't exercise that day. He also is dealing with constipation problems thanks to the drugs. The Colace pill he takes every day isn't doing the trick just yet.

Today, Wednesday, Steve threw up in the afternoon, unfortunately just after walking on the treadmill (it can't be good for your motivation if vomiting is associated with exercise). Today he ate cereal for breakfast and a yogurt for lunch. Terry went to the store to buy some goodies to try to entice Steve to eat more, but he wasn't up to it yet. They called Dr. Hu today and he said to skip tonight's chemotherapy dose and to increase the Zofran, anti-nausea pill, up to three times a day as needed. He also is having Steve take Miralax for his constipation. He said Steve's system was reacting quickly to the Temodar. They are not scheduled to see Dr. Hu until March second.

I hope this passes quickly and Steve's system gets used to the new drug regime without any further nausea. It's so unpleasant to be nauseated, and then you don't eat, and then you don't have any energy. And then your body doesn't get enough fuel to keep working well to build antibodies to fight germs like pneumonia bacteria and tumor cells which might try to grow. Everybody send out your good vibes, prayers and wishes to help eliminate nausea.

Steve said the radiation is quite easy. He goes in to the clinic Monday through Friday around 10:30 or 10:45 in the morning and lies down on a table. The technician places the form fitted, hard mesh mask with solid eyes, nose and mouth parts over his face and fastens it to the table. Steve closes his eyes and relaxes. He hears a low noise as the machine moves from left to right, then top to bottom. It seems bright through his closed eyes. He doesn't feel anything. Then he is done in about seven or eight minutes. They unfasten the mask and he leaves.

If only the chemo was so easy.

Chemotherapy and Radiation Begins

Last night was Steve's first chemotherapy pill. He was supposed to take an anti-nausea pill, called Zofran, followed a half an hour later with 180 mg of Temodar. Then he goes to bed to sleep through any nausea which might occur. If I remember correctly from Terry, he also takes Colace and is supposed to eat a high fiber diet to help with any constipation from the pills, but let's not go into that unless it becomes a nuisance. 


Then today he went to the radiation clinic at the hospital for his first radiation treatment. I want to hear more details about it, but didn't get to talk to Terry about it yet. She did send this message to most of you: Hi all...Steve’s first chemo & radiation went well, no reaction....Hopefully the next six weeks will go this smoothly...Will update once a week....Our love to you all, and many thanks . Terry

I'll post some details as soon as I get them. At least we know what Steve is doing for the next six weeks and that he is staying out of trouble and off the streets at night.

Happy Birthday, Steve

Just over a week ago we went down to see Steve and Terry and to help celebrate Steve's Fiftieth Birthday!!! Whoo hoo! You old fart......  We had a great time and I got to see Steve in person for the first time since Christmas. I don't know how my baby brother got to be so old though....

Steve was looking good overall even though he had only been home a week from his hospital stay. He did tire easily and he rested occasionally which helped. I got to see his scar for the first time from the January 4th surgery. It's on the left side of his head and looks like a boring version of Harry Potter's lightening bolt, just straighter and not so snazzy.  It starts in front of his ear (where sideburns would be if he had them) about an inch and a half. Then it makes a right angle and goes across the top of his ear another inch and a half before making another right angle and moving up the side of his head for about two and a half inches. The whole thing is very neat and mostly hidden in his hair. When the scar shrinks in front of his ear, it will hardly be noticeable, I think. There is no dent or dimple from going through the skull either.  Not bad for such a big surgery.

Most of Steve's weight loss is in his legs. He was Mister Baggy Pants. He walked on his treadmill and is trying to build up some strength, but it hasn't happened yet. He walked fifteen minutes the morning of his party.

I'm pleased that Steve doesn't have apparent cognitive problems. Over the whole weekend I didn't really notice word finding problems although I heard he had a couple of missed words when talking to other folks. He is still capable of working and analyzing things and should be able to work again, once he has enough energy to make it through the whole day and after chemotherapy and radiation.

Terry had a party at their home with about twenty to twenty five friends and family. We had good Italian food and Gelato!! for dessert. He got some good presents, too, including photos from when he was young and cute. Steve has always been an early-to-bed and early-to-rise guy and with his higher level of fatigue he excused himself around 9:30 to go to bed. The rest of us closed up the party shortly thereafter. Fortunately for me, when he awoke the next morning he had enough ummph to make us pancakes. Thanks, Steve!

Home Again

Sunday morning Steve was released from the hospital and is now back home. He completed his IV antibiotics and now has two sets of pills to take at home for another week, I believe.  During his hospital days, he walked progressively further each day and read a lot on his Kindle. Terry spent much of the time with him. He says he feels pretty good and is just a little tired from the whole affair.

He told me about making the mask for his radiation therapy but I didn't quite understand. He said is didn't take long. The whole  process took fifteen minutes of which ten minutes was going between locations. There was a plastic mesh with solid plastic covering over the eyes (and mouth?) and he went into a machine which formed it to his face. Then he went into a second machine for some reason which I forget.  Sorry I'm not too detailed.

I'm looking forward to seeing him this next weekend and hope to have more to report then, you know, when he's FIFTY years old! Hahaha.... my baby brother :-D

Ugh, Four More Days in the Hospital

Terry and Steve are a bit unhappy. Steve hates being in the hospital and this time he has to stay in for four days. His pneumonia needs two different intravenous antibiotics, one every six hours and one every twelve hours and they expect it for four days to fight the bacterial infection they think he picked up in the hospital last time. He's on oxygen and walks around pushing the IV pole and he has respiratory therapy. He doesn't feel too sick, he just has to put in his time. I asked Terry to look into getting physical therapy for him, if the doctor will agree. She was not to happy because she was not allowed to stay overnight with him. Instead, she had a quiet night at home (it was too late to pick up the boys) and went back this morning.

The good news, Steve was still able to have his radiation mask made. They were going to wheel Steve over for his appointment to the adjacent building in between his IV doses today. I haven't talked to them tonight to see how it went. I'll keep you posted when I find out.

A Complication and Another Hospital Stay

Wouldn't it be nice if life went smoothly? You know how just getting diagnosed with a glioblastoma means the odds aren't exactly in your favor? Well, today Steve got diagnosed with pneumonia, meaning his recovery wasn't quite so smooth after all. The odds just weren't in his favor today.

Around noon today I received a phone call from Terry. She and Steve had been shopping at Home Depot for some little things for their house and Steve began to get short of breath. Terry drove Steve to the doctor's office and they sent him to the hospital emergency room at Henry Mayo. He has pneumonia. The hospital doctor was in contact with Dr. Hu to ensure good coordination of care. They were still running tests and Terry didn't know if he would be released home or not.

Six hours later, Lesley updated me on the phone from the hospital. Steve is on oxygen and the chest x-rays and CT scan show early pneumonia in both lungs. They are going to admit him overnight just to be careful and monitor him closely because of his diabetes and the glioblastoma/recent surgery. They suspect Steve was exposed to the pneumonia germ (I don't know if it's bacterial or viral) when he was in the hospital for his tumor surgery. He is receiving IV antibiotics and he is expecting respiratory therapy tonight. His food tray had just arrived when Lesley stepped out of the room to call me. Terry hopes to stay overnight with Steve again and their good friend, Wendy, will watch the boys tonight.

I guess Steve missed lunch with his work friends today and I bet they will have to reschedule his radiation therapy mask making session tomorrow. Too bad.

Recovering From Surgery and Preparing for the Next Steps

Well, Steve breezed through surgery better than anyone expected. He was home Friday after Wednesday brain surgery with all visible tumor removed (how great was that?). From what I gathered, hearing snippets from the family, Steve was only on narcotic pain medicine through Saturday as it made him feel confused and sleepy and then Tylenol was able to handle his pain. He felt better every day and had frequent visitors the following week.  I understand there is no change in his speech so he manages very well with only rare missing words and certainly near enough to normal that many people wouldn't notice. When I talk to him on the phone, he sounds great. He had the whole week after surgery doctor-free so he spent time with his family and resting and went out to dinner to celebrate our sister, Lesley's birthday.

Last Tuesday, January 17th, it was back to the doctor's. First to Dr. Jethro Hu (does anyone else hear Jethro Tull music when I say that?), the neuro-oncologist at Cedars-Sinai. They talked about the next steps for Steve. There is an experimental trial where, if you qualify, your own blood is taken and made into a vaccine to fight your own tumor. This is to help keep new tumors from regrowing at the tumor site. They took Steve's blood to test for this HLA factor to see if he qualified.  They talked about chemotherapy and radiation therapy and the likely schedule with and without the vaccine trial. Dr. Hu also gave Steve permission to drive his car again. He drove part of the way home that day.... the first time in a while! One step closer to normalcy! Dr. Hu discouraged Steve from going back to work until some time after the chemo and radiation treatments are completed. He also began to taper the dosage of Dexamethasone steroid. Every few days he will diminish the dose from 8mg/day down to zero. We loved the Dexamethasone in the beginning because it controlled the swelling inside the brain, but now there is no more tumor to generate swelling and so it is not needed. The side effects of a puffy face have appeared on Steve, so he is pleased to not need it any longer.

Radiation Schedule
Then they went to meet Dr. Nancy Ellerbroeck, the radiologist at Henry Mayo Hospital. She used to work at Cedars-Sinai and has the respect of the radiologists there (who referred Steve to her), but she is located much closer to Steve's house. She will be in charge of Steve's radiation therapy. The way I understand it, first they make a mould of Steve's head, called a mask. This will hold his head still and in the exact same place for each radiation session. Steve is scheduled for next Wednesday to have this mask made.  Then they make a "phantom" head to test this new mask with to see if the radiation will be in the right place (mapping the brain again). That takes about another week, so Steve's radiation therapy will start the following week. He will go five days a week to Henry Mayo Hospital, near his house. The session will take about 15 minutes. He has the mask placed and lies still and is irradiated for 7-8 minutes at a time. This lasts for six weeks. The Registered Nurse, Grace, will do most of the work and Dr. Ellerbroeck will see Steve once a week. This is the maximum level of radiation safely allowed for Steve. There is no further radiation scheduled after this six weeks.

Friday, we got the results of the HLA blood test. Steve did NOT have the right kind of marker/HLA thingy to qualify for the vaccine trial. He won't be able to participate in this particular trial. Later on, if the tumor regrows (and I understand they almost always do), he may be able to enroll in other trials for recurrent tumors.  We're a little disappointed, but, what can you do? His tumor or blood markers weren't the right kind so there is no choice but to continue moving forward with conventional chemo and radiation. Maybe we can "sour grapes" the situation by saying it probably wouldn't have helped anyway. Plus, with this experiment, only 2/3 of the subjects receive the live vaccine, 1/3 receive placebo, so he may not have received it at all even if he had the right blood.

Chemotherapy Schedule
So, the chemotherapy schedule will be concurrent with the radiation schedule. He will take a Temodar pill once a day, everyday, for 6 weeks. He will follow up with Dr. Hu every 2-3 weeks during this time frame. At the end of those 42 days, he will have one month off. They will do a follow up MRI during that month.  Afterwards, there will be a maintenance chemotherapy schedule of 5 pills a month on and off for a year with MRIs interspersed every other month. I'm sure everything is subject to change depending upon actual findings. Stay tuned :)

On a brighter note,  the new family room couch, love seat and reclining chair ordered months ago arrived yesterday. Terry likes them. The couch reclines and has a built in cup holder. I'm looking forward to seeing them.

Also, Steve went to a new family physician since they are no longer Kaiser members, a Dr. Thomas (did I get that right?) Cox, who has been Lesley's doctor for many years. Steve has lost 35 pounds since this started. Yikes! What a way to lose weight. Dr. Cox requested Steve's hospital records so he can make proper adjustment to Steve's diabetes medications. They will hear back from him in about a week with any changes to his medications. Steve went back on the treadmill as soon as the surgeon  gave him permission after surgery. Steve continues eating a healthy diet with very few sweets.

(By the way, Terry says she has lost 19 pounds since Steve's diagnosis. The Stress Diet really works, but I can't recommend it.)

Last night, according to Terry, Steve awoke about 2 am with cold shivers, lasting about 10 minutes. He was confused for just a minute, probably from a dream (something about a sandwich). It's probably nothing, maybe the steroid taper, maybe Steve's fighting a cold that was going around, maybe some medication.  He's been taking Tylenol PM to help sleep through the night. Sometimes we worry too much. Needless to say, Terry watches those little things and we talk about them. Steve's had no trouble today. But, if it happens again Terry will be on the phone to the doctor. Worry warts!

Next week, Steve plans to drive out to work to have lunch with his friends. I bet it feels good to plan a normal activity.

Steve's fiftieth birthday is coming up soon, the first week in February. Maybe he'll be well enough for a good party, if it doesn't last too long. What to you think?

Already Home

Just a quick update to let you all know that Steve is home! Hard to believe that he had brain surgery on Wednesday and is home by noon on Friday. He looks really good, and is feeling pretty good. A bit of pain at the incision site, still some pesky floaters in his right eye, and a bit of brusing and soreness at the IV sites, but overall he is doing amazingly well.
He and Terry plan a quiet weekend at home, watching football, while he recuperates. He is still very tired. He has a week off from seeing any doctors, and he is pleased about that.
Thanks to everyone that have sent prayers, good wishes and positive thoughts his way, they certainly did their job!
Lesley

One Day Post Surgery

Steve was moved out of the Neuro Critical Care Unit today into a regular room. The removed all the IV lines, and he is free to eat and move around. He is however very, very tired. He did not get much sleep in the CCU (maybe 2 hours). Terry is allowed to stay in the room with him now that he is in a regular room, but it looks like he will go home tomorrow.

Dr Patil visited them this morning and said again that they got the entire tumor out. It is the best possible outcome they could have hoped for with his surgery. They will still do chemotherapy (2 months in a pill form, so he will take that at home) and radiation (as for as I know from the past discussions it will be 5 days a week for 6 weeks, possibly beginning 2-3 weeks post surgery). Cedars does have a radiologist that Steve can get his treatments from here in the Santa Clarita Valley, so he won't have to drive to West LA daily. Steve and Terry will talk to the neuro-oncolologist and the radio-oncologist at Ceaders either today or tomorrow so I will know more information soon. Exactly how they will do the radiation - we don't know yet.

As far as the vaccine program goes, the doctor wants to "put it in his back pocket" for now for two reasons: One, the removed the entire tumor, so there is very little if anything for the vaccine to destroy. And second, they are getting the best results when they use the vaccine on a recurrent tumor. So if a tumor regrows/returns or grows in a new place, they will build the vaccine at that time from the new tumor.

All this information is second hand to me from Terry, so I hope I got everything right.

Steve feels pretty good, except for the exhaustion. The "floaters" are already disappearing, and every other function seems to be working just fine. He will be really happy to get out of the hospital because they keep pressure cuffs on his legs while in bed to keep blood clots away, and he says they are uncomfortable.

I think that is it for today, Our brother Greg was with Steve and Terry most of the day, and Jessica and I visited briefly. Scott drove down tonight to bring both Steve and Terry some fresh clothes to come home in tomorrow, and because he wanted to visit with Steve. I believe that Greg is driving home to Northern California tomorrow.

Let me know if you have any questions!

Lesley

The Day After Surgery: Some News from California

Barbados is four hours ahead of California. We have been gone all day and I have been thinking about Steve often. I get back to our cottage and there is only a little news for me. I assume some summary of the day will be posted later, after I have gone to sleep. 


This from Chrissy, via Facebook message:


Hi again,

Spoke with Terry a bit earlier.....this is what she has told me. Dr. Patil says tumor is gone. Dr. Woo will be Neuro-Oncologist. Will need to see him every few months as chemo will be done in pill form at home. Radio-Oncologist will be at Henry Mayo...closer to home. Dr. Woo or Dr. Patil (not sure which) will recommend someone. Vaccine study not to be done yet.....will be used if there is a re-occurrance as that is when it works best....and since there is no tumor....not needed yet. New prognosis.....3-5 years.....Hoping both Greg and Terry can confirm all since i was not there today....this is my understanding from the conversation. Steve may be able to go home tomorrow. Currently resting as he didn't sleep much last night. I am going to visit after i get out of work today. 

Hope you are enjoying yourself!!! I will keep you posted.


Thank you Chrissy! 


Terry's post on Facebook this morning:

Terry Ravenscroft

Good Morning everyone....The got the ENTIRE tumor out!!!!! We are sooooo blessed!! Will see Dr. this morning, to figure out the plan from here... and Steve will move to a regular room,...Hopefully, I can take my love, home for the weekend....My love, and Gratitude to all as we move forward in our journey.....Love, Terry

This was followed by fifteen comments and 10 "Like"s wishing them well. I didn't post them for the sake of space, and because I posted similar comments in yesterday's blog. 


I am looking forward to hearing more details about how Steve is feeling and how he is doing.  I expect he must have a headache :)