Dr. Says Steve's FINISHED With The Surgery Phase!

We had another followup appointment with Dr. Lowy today and he said Steve didn’t need to come back anymore.  He’s essentially FINISHED with this surgery process!  Wow … what a moment that was!  This has been an unbelievable journey and we hope to not be back there for a very, very long time!

Steve continues to get stronger each day.  He’s still on the heavy duty pain meds, but has cut back to half of what he started with and will continue to cut back as he continues to heal. 

Steve will now go back to Kaiser for regular monitoring with blood tests and CT scans and will be working with a team including the gastroenterologist and the oncologist who originally worked together to diagnose this and get us a speedy referral to Dr. Lowy.  They will be consulting with Dr. Lowy as we go along to interpret changes in the test results as they occur.

After Dr. Lowy released Steve today, it truly seemed like “the first day of the rest of our lives.”  We’re so deeply grateful for each and every day.  God has been so amazingly present and faithful through the enormous ups and downs of the last few months and we’ve felt His love and protection and care every step of the way.

We’ll update things here on the blog occasionally and will certainly let you know right away of any changes or concerns.  Right now no news is, indeed, good news!

So, Steve is feeling good and we look forward with thankfulness and trust to rich and blessed days ahead!  Please continue to keep in touch by email or phone … your friendship, love, support, encouragement and prayers literally make all the difference for us.  We love you all so very much!

~ Keren

 “Many things about tomorrow I don’t seem to understand, but I know who holds tomorrow, and I know He holds our hand.”

Where are we now, what's the big picture and where to go from here?

We had Steve’s followup appointment with Dr. Lowy, the surgeon @ UCSD. Basically, there were no surprises and no real new information. This was extremely good news and left us both heartened and relieved.

Let me start by saying that Steve looks and feels better than he has in years, his appetite is great and he can eat about anything, we go out every day (often for a meal .... some things never change!) and though he's still healing from the surgery, he's doing VERY well and the Dr., and all of us, are very pleased!

Where do we stand now?  A look at the "big picture."
So …. Here’s a recap of information we have so far. This is more medically detailed than we’ve posted here before, and it’s an interesting dilemma to decide how much to post and how much is ToMuchInformation. In an effort to keep you all informed and aware of the "big picture,"  and in order that you understand what Steve is going through and also to give you the background to understand any decisions that he makes about future treatments, we've decided to go with the “more is better” idea for right now and post more details.

What’s the Diagnosis?
Diagnosis on the surgery report is: “pseudomyxoma peritonei from metastatic appendiceal carcinoma.” Stage IVB. An important thing to remember is that, though it is Stage IV, it is VERY slow growing, as compared to other, more aggressive cancers. The doctor said he could have had this for up to 10 years and been symptom free until this Christmas. He’s had physicals and been given a clean bill of health, the last one being in October 09.

What was done in the surgery?
In a previous post I said that they took out a lot of "stuff."  Here's the more detailed version of that.  Ok – so, in the cytoreduction surgery they made a 22” incision from the sternum to the pubic bone, used a rib spreader to spread the lower ribs apart, took out 3 very large tumors basically filling and covering the abdomen (one football sized, one disc shaped like a 14” pizza, and one the size of a couple of softballs,) Steve’s spleen, gall bladder, appendix, 4 inches of the colon near the apendix, the omentem, many smaller-than-a-softball tumors, liters of mucinex tumors, 15 lymph nodes, stripped the lining of the peritonium in numberous places, and scraped numerous sites on various organs where the pseudomyxoma had spread. and that’s the short version …. it was a huge surgery.

What could they NOT do in the surgery?
They could not get it all. The important thing is that the small intestine is basically covered with small, seedlike tumors. They cannot get them off, and they cannot resect (take out) very much of the small intestine. This disease is not expected to invade the small intestine, or any other organ, but what it does do is squeezes it and causes it to harden, until eventually the organ cannot do it’s work. This is usually a slow process and the Dr. said that the intestine still looks fairly good, and he would expect that within a couple of years there might be a bowel obstruction, at which point he expects they can go in and resect a small, obstructed portion of small intestine, leaving the rest still working ok, though still covered with tumors. He said they have done this up to a couple of times on other patients. There could also be other problems unrelated to the small intestine, especially as time goes on, but at this point the small intestine is the major issue.

What new symptom have they already found?
Already we’ve had one of those unexpected symptoms. As I mentioned in an earlier post, they found that the cancer had metastasized into one of the 15 lymph nodes they removed. This rarely happens and was a surprise to all.

What treatment is indicated now?
So, because of the involvement of the small intestine, the disease will never be cured, and it’s now a “managed health issue” similar to living with heart disease, diabetes, etc.

He will be monitored very closely and regularly every 3 months with blood tests and CT scans. The disease can be expected to continue to progress, but slowly, as is typical of this type.

For the pseudomyxoma the surgery was the treatment, and now we wait for further symptoms, like the bowel obstruction, and then treat that. Chemo is not effective for this kind of cancer.

For the cancer that’s spread to the lymph node, they sometimes treat with chemo, and sometimes they don’t. It’s a judgement call.

The emphasis now is on “palliative care” (see wikipedia for a good explanation) which includes all appropriate forms of medical treatment as well as having the goal of improving the quality of life and managing the disease rather than striving to cure it.

So, what are the thoughts right now on whether or not to have the chemo?
At this point Steve has a really good quality of life going on! ☺ no pain from the disease (still has pain from the surgery, but that will and is getting better), is feeling better than he’s felt in years, and the Dr. said he expects this to continue until the next problem shows up. And again, he mentioned a couple of years as a target. At that time he said they can hopefully fix the presenting problem and he can go back to a symptom free life until the next time.

There is no evidence that the cancer has spread outside of that one lymph node, though there is certainly the possibility. If it has spread there is no evidence that chemo will help/stop further spread, though it might.

The chemo would not be effective in any way on the main cancer in his abdomen. That will still be there and continue to progress.

Right now they wouldn’t consider doing chemo until 2 or 3 months out of surgery to give him time to heal. At that point it will be a question of balancing quality of life on one hand and, on the other, aggressive chemo treatment which will greatly and negatively impact his quality of life for considerably more than 6 months. And this without any evidence that it is needed or will be effective. And in any case it won’t change or make better the main problems with his small intestine and the original cancer.

There is no easy answer to this. The Dr. said that if Steve wants chemo, he would gladly give it to him, but he said to really consider the quality of life against an uncertain payoff. (he put it better than that). It will not make better the main, over arching problems of the cancer in his abdomen, but would only POSSIBLY make better a subset problem that MIGHT be there. If at any point the blood work or CT scans showed any indication that chemo might be indicated, then we would certainly re-evaluate the situation.

So, for now, we enjoy each day, enjoy each other, enjoy all of YOU, our friends and family, make plans for summer vacations, begin buying Christmas presents (like that ever happens early!), finish cleaning out the dreaded garage, continue to enjoy and be proud of Joelle, look forward to Jenna and Brian’s move out here, and above all trust, rejoice and give thanks for today and that Steve is feeling so good.

Once again …”I know not what the future holds, but I know who holds the future, and I know He holds our hands.”

Proverbs 3: 5-6 “Trust in the Lord with all your heart, and lean not unto your own understanding. In all your ways acknowledge Him and He will direct your paths.” I Peter 5:7 “Casting all your cares on Him, for He cares for you.” I love these verses. 

So, we're looking forward to spending time with you, our dear family and friends, and to living each day with purpose and even joy.

Once again, thank you beyond words for your continuing support, encouragement, love and prayers. You mean the world to us. It sounds so trite, but it's so true.  ☺

We love you all,
~ Keren

A Message from Steve, by Steve

To  My Friends:

Now that I  am able I would like to thank you all for your generous support during my very difficult time. It was not an easy surgery as I am sure you are aware, but it seemed clear to me  that during the process  I was protected and surrounded with great love and positive thoughts.

Previous to the surgery I was dying. It was that simple.  Now I have been given a reprieve of unknown duration. I wake up each day with a fresh and new perspective. I am glad to be alive and able to enjoy our beautiful world.

I hope to see all of you in the near future.

Again I want to thank you from the bottom of my heart.

I felt your prayers and am grateful. I also felt your greatness and compassion. I will not ever forget this.

Steve

FINALLY ~~ we're home!

Well, the Dr. released Steve to come home this morning.  We got to spend the afternoon and evening with Brian, Jenna, Samantha and Molly, and what perfect timing to come home and be able to spend time with them!  They'll be going back to Charleston in the morning, but will be moving back out here to Edwards AFB the first week in June.

Steve actually spent most of the afternoon awake, sitting and talking with everyone, and playing (on the floor of all things) with Samantha.  I'm not sure how he ever got up from there.  He's on his super duper pain meds, and I have to give him a shot every morning to help prevent blood clots, so we'll see how that goes.  He also has one tube still in that has to be drained a couple of times day, but that's not a problem.

I saw Steve walk slowly out around the pool this evening, surveying his flowers, and literally got tears in my eyes.  What he's been through is almost inconceivable to me.  Most people have one thing, like a gall bladder out, and THAT's major surgery, but what he had done is about as radical and invasive as it gets (except for our friend, Jason who had all this and more, plus a double lung transplant).  Still .... Steve's gone through everything being kind, loving and appreciative and it's been a real privilege to be with him through it so far.

I'm so deeply grateful to God tonight for bringing Steve home and for such an amazing beginning to recovery from surgery.

Once again, thank you all for your continuing good wishes and prayers.  You mean more to us than we could ever express.

We have a followup appointment with Dr. Lowy on April 6th and will have more news at that point.

With love and gratitude for you all,
~ Keren

STILL Not Home

Well .... we're still not home.  They did blood tests and CT scans today to try and find out why Steve's white blood cell count is off, and we haven't heard the results yet, but should hear at their 6:00 am rounds tomorrow morning.  All signs point to that we will be able to go home tomorrow.  My best guess is that If they had found any signs of infection or anything they would have started him on antibiotics already.  It's actually been a good thing for Steve to have this extra time here.  The progress I can see almost hour by hour is amazing.  In between the frequent naps he's sitting up, walking, and chatting up a storm ~ always a good sign :-)

This pain medicine is working great for him (Norco ~ for our medical friends.)  Vicodin didn't control the pain and made him sick, but he feels fine on this one and, though it hurts of course, that horrible pain is under control.

The other thing that is going on this weekend is that Brian, Jenna and the girls are here, just for the weekend for a good friend's wedding.  We've been very sorry to not see them so far, but we all know it couldn't be helped.  We'll spend the day with them tomorrow, either here in San Diego or at home, and we're SO looking forward to that.  Knowing they'll be moving to SoCal makes it easier to miss them this time.

ok, well, we'll keep you posted tomorrow!

~ Keren

Not Home Just Yet

Today was the day we thought we would go home, but, as they say, it's always something!  They were still adjusting Steve's pain meds to get just the right balance, and by this afternoon that seems to be going quite well.  Also his white blood cells were slightly up and, although that can be a normal fluctuation they want to be sure they're normal before they let him go.  So, we're here for at least tonight, and hopefully everything will get resolved by tomorrow and we can go home.  The extra day here has actually given him more time to just rest and continue to heal and although we would have loved to go home, overall it was probably good that we stayed.

Will keep you posted tomorrow, 

~Keren

Rejoicing in Recovery ... and a speed bump.

Today is bringing more progress and also our first “speed bump” along this new road.  Dr. Lowy said all Steve’s systems are doing so well that, if things continue this way, he plans to discharge Steve on Friday!  So …. Today the last chest tube came out, as well as the IV so he’s no longer tethered to any poles to walk, etc.  That means he can get out of bed basically on his own, use the rest room, walk the halls, all without an entourage of people and equipment.  He’s still a bit shakey on his feet and tires after one walk around the wing, but that should improve a lot tomorrow.  Today they actually changed his medical status to one that indicates he doesn’t need acute care anymore and that meant moving floors, so now we’re in room 302, if anyone’s keeping track :-)

The switch from morphine to vicodin  was not quite as smooth today.  We forgot to ask for it on time and the pain got away from him somewhat, but he laid low until this evening and now its pretty much back under control.  I’m going to set my alarm so we can ask for it on schedule tonight.  For some reason at this point, and this close to discharge they want the medication to be given as needed and asked for by the patient (or his wife :-)  ) 

Ok – here’s the speed bump.  As I mentioned yesterday, everything they took out of him was sent to pathology.  That included about 15 lymph nodes.  Now, this cancer is known for NOT going into the blood or the lymph system, but in this case, and against all odds, they found cancer in one of the lymph nodes.  We’re not sure at this point if this is a game changer, or a speed bump.  The doctor said NOT to focus on this right now, but rather stay focused on how well Steve’s doing and on him continuing to get better .  Dr. Lowy said that when we go in the first week of April for our post-op appointment we’ll have a long discussion about the details, implications and his recommended course of treatment.    They’re doing further tests on the tissue and will then be able to look at drugs specially designed to target the specific type they find.  As we get more information about this we’ll keep you posted, but for now, we remain focused on Steve’s remarkable progress from surgery.

So …. Here we are in a waiting game again.  I know that God’s hand is on our lives right now as much as when things are going great.  He continues to love us, sustain us, and be with us through the ups and downs, and the tears and storms of life.

There’s a song I remember from when I was a child.  “…many things about tomorrow, I don’t seem to understand, but I know who holds tomorrow, and I know He holds my hand.”    We continue to be thankful and rejoice in Steve’s amazing recovery from surgery and will continue to keep you posted.

thank you for your continuing love, support, words of encouragement and prayers.

We love you,

~ Keren

Going Home Day In Sight!

Steve is really progressing nicely, and today several things happened that bring him closer to being discharged from the hospital!  He was taken off the morphine drip and put on Vicodin, which seems to be working, if not perfectly, at least more than adequately.  They started him on solid food and that seems to be going well.  Also, they took out one of the two chest tubes that need to come out before he goes home, and they plan to take the second one out tomorrow.

Once these things are all done they want to give him a day or so to be sure all his systems continue to work properly and that there aren't any surprises.  So….the doctor mentioned the end of the week as a realistic possibility for him going home.  He feels really good, given everything, and is anxious to be home where he can actually sleep more than an hour before someone comes in to do something he needs to wake up for!

Apparently everything that they took out during the surgery was sent to pathology (who knew?) and they will be getting the results back from the lab very shortly so we’re anxious to hear about those.

with love,

~ Keren

...and the beat goes on

Steve’s progress continues …. he started on clear liquids, sat up for a couple of hours and walked some more today.  They stopped the epidural and he went on a morphine pump where he pushes a button every so often for a little bit as needed, which is pretty regularly.  The transition was difficult and he was in serious pain for awhile but they have it pretty much under control tonight …. hurts, but it’s manageable. 

Tomorrow a couple more tubes might come out and he’ll walk some more … all progress!  The doctor is very pleased and mentioned tentatively that if all continues without any problems coming up, he’ll possibly be able to go home sooner rather than later, although he wouldn’t be more specific than that :-)

hugs,

~ Keren

Progress Continues

Well, day 3 brought continued improvement although seemed to have a few more ups and downs. Steve’s bottom ribs hurt a lot (the Dr. said that was to be expected based on the amount of work they had to do under there) but even so he was able to not only sit up, but took a walk around this wing of the hospital.  He had a regular entourage, what with Joelle and me as the fan club, the physical therapist, the man from the lift team and lots of equipment holding the various things still attached to him  :-)

The other big event of the day was that Steve was allowed to have a few popsicles, which he was actually thrilled about!

Everyone had a good nights sleep.  This morning Steve’s ribs feel some better and he’s using the epidural pump less and less though the continuous drip continues.  On the agenda for today are TWO sessions of sitting up and walking around and he also gets to start on a liquid diet.  Hooray for Jello!

Thank you for your continuing support, love and prayers.

hugs,   ~ Keren

Another Good Day In Room 208!

Steve had another good day today.  He tried to cut back on pushing the button for additional epidural meds, but after a couple of hours quickly went back to taking as much as he’s allowed.  He now agrees with me that the epidural is his best friend.  They took off some of the monitors today which means less lines attached to him and means it’s easier to roll from side to side, though managing the several remaining tubes in and out remains tricky.

When he sat up today the improvement over yesterday was amazing.  He was much stronger and the maneuver took much less effort on his part.  He sat there for an hour or so and finally asked to lay back down out of a mixture of being tired and being bored just sitting there.  Tomorrow we’re going to play some cards and he thinks he’ll get on the computer for awhile.  Maybe he’ll write here on the blog tomorrow!

So, all in all we are SO thankful for the steady progress we see in all areas.  He’s still not allowed anything to eat or drink but was allowed a couple of ice chips every few hours today.  He most misses coffee and Coke Zero  :-) 

Joelle and I are tag teaming “shifts.”  I slept like a log for 7 hours on the chair/bed here in the room last night while she sat with Steve.  Today she slept at the hotel all day today while I spent the day with him.  Now I’m about to go to sleep and she’s up with Steve for the night.  It’s working out very well with both of us rested and glad to be able to take care of him.   We had a nice evening all together watching “American Idol” by the flickering light of our battery operated candles.  Quite cozy actually :-)  and a great example that home really is where the heart is!

We remain grateful for your love, encouragement and prayers.

Love you all,

~ Keren

Tuesday ~ Day 1 Of Recovery and All's Well

So, day one of recovery went smoothly.  The first night they were trying to find the optimal level of epidural and for a while he had a lot of pain.  As they adjusted the epidural levels they were able to finally control it very well and today there is some pain but it’s very manageable.  He keeps pushing a little button to get a little extra epidural if he feels the need for it.

He is sleeping a lot, as much as is possible with all the medical team coming in to work on him so often, although he actually sleeps through some of the procedures.  Every time he wakes up he’s more alert and every few hours I can see he’s stronger than before.  He has NUMEROUS tubes ~ some taking things out and some putting things in :-).  It seems that several times an hour someone is coming in to work on or with him ~ nurses, doctors, pain management team, portable xray techs, lab technicians, lifting team (he sat up twice today!) physical therapists, and more nurses.  I’m sure there were more …oh yes!  They had to get him an extension bed since the regular one was too short :-) and this took a whole team to help him sit up, move to a chair, bring in and set up the new bed, and get him back to bed, without messing up any tubes!  These people really know what they’re doing.  He is receiving truly expert, top notch care.  This room in the surgical wing is set up almost like the ICU, the difference being that the nurses have up to 3 patients instead of  just 1 or 2. 

Joelle and I spent the night here with Steve last night, and will both be here tonight also (Tuesday). There’s a bed/chair thing in the room and Joelle sleeps mostly during the day and stays up with Steve all night while I sleep at night and am up with him during the day.  It’s really comforting and helpful to him to have one of us right by his side. Both Joelle and I are feeling rested and actually enjoying the time with Steve and each other.

Thank you all for your continued email, calls, messages, comments and prayers.  We are resting MUCH easier on this side of the surgery and are leaving the future in God’s hands.

Love you all,

~ Keren

Prayers Are Answered ~ Steve's Out Of Surgery

Ok ~ well ..... Steve is out of surgery much sooner than we had thought possible, and the news is very positive.  They removed huge amounts of "stuff" including everything that's been effecting his quality of life lately.  While they were unable to remove absolutely everything, what they had to leave is extremely slow growing and will in no way effect the quality of his life now.  He will be monitored very closely over the next years and if/when necessary they can always go back in and take out what small amounts may be causing any further problems.  The doctor has another patient in the hospital now that just had that done and it's been 6 years since original surgery,  he's still going strong and his case was much more advanced and more difficult than Steve's.

Dr. Lowy said this is now a "managed health care" issue.  He said Steve will continue to be closely monitored and can go back to living a normal, pain free, unrestricted life, including (and Steve will LOVE this) body surfing!  :-)

He's in recovery now and will be taken directly to a room, bypassing ICU completely, so we'll be with him soon and he should be fairly awake.

Thank you all beyond words for your support, words of encouragement and love and for your prayers.  God has truly answered prayer.  God is working his perfect will and we are accepting it in the faith of His love.  I'm so aware that none of us knows what the future holds for us, and our lives are in His hands at every moment.

We will continue to update more today and the days to follow.  Please continue to pray.  We love you all. 

Surgery in 8 Hours

We'll update you on Steve's surgery tomorrow.  For tonight, in the middle of the whole thing seeming surreal,  Jennifer sent me these verses. 

"And my God shall supply all your needs according to His riches in glory in Christ Jesus." Phil. 4:19  
"I have loved you with an everlasting love;  I have drawn you with lovingkindness." Jer. 31:3-4

Thank you for your love and prayers.  God bless us all.

Where We'll Be In San Diego

First of all, thank you so much for your prayers, comments, calls and emails today.  God has once again met our needs and we have had a good day of spending time together.  Steve is sleeping and Joelle and I have ordered pizza to our hotel room and are watching movies by the light of the battery operated candles I got for Steve's hospital room :-)  They're actually quite convincing.

Please do continue to pray for peace and healing for Steve, for peace and trust for the rest of the family, and for wisdom and focus for the doctors and medical team during the surgery tomorrow.

Here's where we're staying while in San Diego.  Thank you SO much to Steve's dear friend, Greg Lough, for setting this up for us and making it possible.

Sheraton Suites San Diego at Symphony Hall
701 A Street
San Diego, CA 92101
619-696-9800

Steve will be at:
Thornton Hospital (UCSD Medical Center - Moore Cancer Center)
9300 Campus Point Drive
La Jolla, CA
858-657-7000

PreOp and Getting Ready

We went to San Diego yesterday for  a pre-op appointment with Steve’s anesthesiologist and a final consult with Dr. Lowy, the surgeon.

All went well, and there was no real news to speak of.  The one new thing we found out is that when the surgery is over they will give him an epidural.  They’ve found that completely blocking the pain is the best way to manage the incredibly intense pain for the first few days.  They plan to use that for 3 – 5 days and then wean him off and onto other pain meds.  He wasn’t thrilled about this, but I told him that in my opinion, after some experience with having surgery, the epidural will be his best friend when he wakes up!

We’ll be going back to San Diego on Sunday and the surgery’s scheduled for first thing Monday a.m. Thank you all so very much for your continued support, encouragement and prayers as we wait.  You mean more to us than you can know. 

We will keep you updated on Monday, during and after surgery, and in all the days of recovery to follow.  I'll also post the hospital location and contact information.   Also, we’re finalizing our plans for the hotel where Joelle (when she’s down there) and I will be staying, and will let you know.

Please continue praying as we’re finding the last few days of waiting is getting somewhat stressful and draining. I am continually amazed how even in the middle of stress, God constantly reminds us of  His presence in our lives, and whenever we have a need, it is is filled, without us ever asking.

We love you all,  ~ Keren

Touching Bases While We Wait ....

This is just an interim update while we wait for Steve’s surgery on March 15, which I just realized is a month from today.

First of all, thank you so much for all your continuing prayers, calls, emails, and comments here on the blog – you can’t imagine what a difference you all make.

To recap where we are right now, for those of you asking or who may have missed the posts below, we will be going to the University of California at San Diego for Steve’s surgery on March 15. The surgery will be done by Dr. Andrew Lowy who is an internationally recognized expert in treating this rare form of cancer (pseudomyxoma peritonei). Also, the post surgery team at UCSD is trained and experienced in caring for recovering patients that have had this type of rare and extensive surgery.  The surgery can be from 8-15 hours long and recovery time in the hospital is expected to be anywhere from 10 days to 3 or 4 weeks, depending on the length of the  surgery and what they have to do.  We’re so thankful for answered prayers and a quick Kaiser referral to USCD and Dr. Lowy.

A couple of things to note:  1) to read details of what the surgery entails scroll down this page to the post below from Jan 27.  Surgery details are highlighted in yellow.  2) to read more about Dr. Lowy and his qualifications go to   http://health.ucsd.edu/news/2007/7-11-Lowy.htm

 

I’ll be staying at the hospital the whole time, and Joelle will be taking classes in Pasadena but plans to be at the hospital the first few days and then as often and regularly as possible.  We are getting a condo right across the street from the hospital that they make available at a low cost to families in these situations.

While we wait for March 15^th we are balancing working through a medium sized “to do list” with spending lots of time just being together and enjoying friends, family and each other. 

Our friend, Debbie, is a nurse who has worked pediatric oncology and we have taken her input to heart. She writes, “As much as possible in the weeks before the surgery, find time to just be - with each other and with friends. Ask for help if you need it …… 

And rest in the Lord for He loves and cares for you both.”

Reminds me of a verse I learned when I was about 3 yrs old …. “Casting all your cares upon Him, for He careth for you.” (I Peter 5:7)  Who knew that some 60 years later (ok ~ 61 years later)  God would use these words, so child like in their simplicity,  to be such a comfort in these days of just waiting.

We're so thankful that Steve is in no pain at all though does have some discomfort as the fluid in the abdomen keeps building back up.  He doesn't have much of an appetite, though he's eating anyway :-)   We get out and about most days, sometimes running errands, eating at favorite places, visiting SoCal sites, talking, generally enjoying the beautiful weather these days and just being  together. We also do a fair amount of laying around the house, watching tv, reading, puttering in the yard (well, Steve does this), and taking naps  :-)

We love you all, and again, thank you SO much for your prayers, calls, comments here on the blog, and emails.

~ Keren

Got The Date!

March 15th will be the surgery date! We would have liked it sooner but for several reasons, this was the optimal day. The doctor assured us that medically, it doesn't need to be sooner, so we're going with his recommendation. One upside to the waiting will be that we'll have unhurried time to work through the 'to do' list we've been putting together ~ everything from legal stuff to getting the dog groomed :-)

We probably won't have a lot to add to updates until the time gets closer, but we do ask for your continued prayers. Also, remember our email is ksagehorn@adelphia.net and we're always near our home or cell phones :-)

We love you all, ~ Keren

They're Going To Do The Surgery!

We saw Dr. Lowy this morning and he said that surgery is very much indicated in Steve’s  case, so we’re going ahead with it!  He explained everything, which is pretty much as I described in the post below on January 27th.  They’re checking to see if one of their two low cost family apartments is available for us during the time he’ll be in the hospital (2 weeks to a month) so I can be there all the time and have a place to sleep other than a cot in the room.  Joelle will maybe/probably take classes in Pasadena and still wants to be with Steve as often as she can.  I’ll drive up every Wednesday to be with my mom.

Dr. Lowy’s office is today getting further authorization from our insurance (Kaiser) and its pretty much a forgone conclusion that they’ll approve it since they already referred us to him.  They are also trying to book an operating room as soon as possible. Currently they’re booking for March 12^th but the wonderful nurse/assistant is trying to do some maneuvering and get a much earlier date. We should hear within a day or so what the actual date will be.

Steve’s feeling very encouraged and optimistic about this, as are we all.  I’m not sure I would have believed that we could be SO thrilled about having a brutal, 8-15 hr. surgery like this, but its amazing how your perspective changes when it’s the only/best option!  After researching his excellent work and meeting with Dr. Lowy we have the utmost confidence that God has answered our prayers and put Steve with the best doctor for this.

Thank you all so much for your continuing love, support and prayers.  The referral in itself is an answer to prayer, and then that the surgery is possible in Steve’s case is….well, we’re SO grateful and thankful.

We’ll let you know as soon as we get word of a specific date.

Love you all,  ~ Keren

Got The First Appointment!!

We have an appointment to see Dr. Lowy @ 8:30 AM tomorrow, Tuesday, Feb 2!  They said by the time we leave there we'll have a treatment plan.  She said he may want to do a surgery to look around in there before the big one, but we'll have to wait and see.  We're all SO encouraged by this.

My friend Mary sent the following link which I hadn't seen and which has been really informative.

http://health.ucsd.edu/cancer/patcare/hipec/

Continued thanks for your continuing love, support, and prayers.

more later,   ~ Keren

Quick Update ~ Official Referral!

A quick update … today we got the official referral from Kaiser to Dr. Andrew Lowy @ UCSD.  By the time we got the referral case # they were gone for the weekend, but we’ll be calling first thing Monday morning for that appointment.  We had been hearing that it was in the works, but it’s so good to have the official word and we’re so very thankful.  Now, more waiting.  Psalm 27:14 is my verse for the weekend  :-) "Wait on the Lord. Be of good courage and He shall strengthen your heart ..." 

 

Waiting For Next Steps & Some Medical Terms

The last five days have been filled with tests, more tests, lots of reading and researching on the internet, and lots of waiting. The more we read, the more we were made aware of Dr. Andrew Lowy, now of UCSD and of the impressive work he has done to develop and further the procedures that Steve needs. My prayer has been that God will put us with the doctors that are the best for Steve, and today we heard from the Kaiser oncologist that he is referring us to Dr. Lowy rather than the Kaiser facility in San Francisco. We don’t know why that is yet, but I’m personally thrilled and thankful for that shift. While we’ve heard good things about the Kaiser facility, Dr. Lowy and UCSD are clearly national leaders and experts in treatment of Steve’s particular kind of cancer.

The referral is still in the works and my guess is that we will hear specific dates in the next couple of days. We’ll definitely keep you updated about that.

Ok – a few of the medical terms. This borders on TMI (too much information) so skip this paragraph if you want, or read on if you want some of the medical terms. For our nurse/doctor/medical friends, please forgive me if I misstate anything – this is as I understand it only. As I mentioned in my first post, Steve has malignant Pseudomyxoma Peritonei, which is a cancer originating in or near the appendix that leaks a thick, sticky fluid out into the abdomen (the condition is called ascites) bathing everything in the abdomen with cancer cells and causing tumors pretty much all over everything. There is now one only one treatment, a brutal, extensive and radical surgery called Cytoreductive Surgery, typically taking between 8-15 hours, where they remove all visible signs of tumor by essentially stripping the lining of all the organs and possibly resecting portions of the large intestine and other organs if necessary. This is followed immediately by Hyperthermic Intraperitoneal Chemotherapy (HIPEC) in the operating room. This is where they bath the abdomen in heated chemo (about 107 degrees) for up to 90 minutes to kill the cells they can’t see. The chemo is then drained from the abdomen and the incision closed up.  The hospital stay is anywhere from 10 days to around a month followed by a pretty lengthy recovery at home. They are having, at least as I read it, some promising results with the surgery.

Some of the most helpful articles I found were by googling +Dr. Andrew Lowy +UCSD which gave many articles from medical journals. Another very informative site is http://www.pmppals.org

Steve continues to be in no pain at all, although he does have some discomfort as the fluid is returning after (8 liters) being drained off a week or so ago. We’re having some really nice times together. It’s amazing how this changes your perspective on everything. We cleaned out the garage this weekend (with lots of help from Joelle and 3 other friends), and we didn’t even fight, I mean have intense discussions, even once! That in itself is a miracle. We’re also trying to get out every day, between rainstorms, and go the movies, eat out, take drives, and just generally hang out and enjoy each other.

We're feeling very close with both Joelle and Jenna as well.  Joelle goes with us to most procedures and tests so we're sharing everything together, and Jenna is on the phone with us both before and after each one as well.  We're SO thankful that Jenna and Brian (and dear Samantha and Molly!) will be moving out to Edwards AFB within a few months or so, where Brian has been accepted into Test Pilot School! :-)  God's timing is impeccable (thanks for that word Shelley).


I can’t begin to thank you all for your words of love and encouragement and for your prayers. I can truly feel God’s peace, even in the middle of some really emotional times as we wait for further news and next steps. 

Thank you again. We love you, each and every one.
~ Keren and Steve

The C Word ~ and S for Surgery

The short story is it’s very serious and Steve will be having surgery in the near future. A more detailed version is that …………

Today at the first appointment with the oncological surgeon, we got a bigger picture of just what this looks like. It’s very, very serious. The very rare cancer which began in the appendix, leaks large amounts of fluid into the abdomen, and the entire abdomen is being bathed in cancer cells which cause tumors. However, As I understand it, they do not go into the blood or the lymph system. hooray.

A very few years ago there was nothing they could do. Today, however, there is a VERY extensive, radical surgery that lasts anywhere from 8-15 hours where they go in and systematically clean every single sign of cancer that they can see. This is followed by a lengthy ‘bath’ of heated chemo in case there’s anything left they can’t see, followed by a specific chemo afterwards. Regular chemo isn’t effective with this. One patient who had this surgery called it the MOAS surgery (Mother Of All Surgeries).

Because the surgery is so very specialized and requires extensive, sophisticated, high tech, expensive equipment, and highly trained physicians with extensive experience in this surgery, there are only a few places in the country that do this and we are fortunate to have access to one of the premier centers through the Kaiser facility in the San Francisco Bay Area. It is widely recognized as one of the best places on the West Coast and we are confident Steve will receive the best of treatment there.

So, at this point, the referral to the San Francisco treatment center is beginning. There are a couple more scans and tests that will be completed by Thursday, Jan 26th, and at that point Steve will be scheduled for surgery in San Francisco.

Over the next few days I’ll be matching the medical terms with what I’ve just told you, but at this point I can’t process them so I’ll have to get back with you on those so you can look things up if you want to.

We’re all finding this a huge amount to process in one day. While, on one hand we basically knew the facts from the other doctor, today, hearing it put all together and said out loud was difficult. It made it real.

We have many questions yet to be answered, as I’m sure you do. We’re keeping question lists and plan to have frequent conversations with the oncologist in Anaheim who encourages that.

Please feel free to email or call, we treasure each of you …. I just wanted to put all info on this blog to keep everyone informed on a timely basis.

We thank you all for your love, support, good wishes, and prayers. I’m so glad for all those verses and songs I learned as a child about leaning on the everlasting arms, and about Jesus being our anchor that holds through the storms of life. and what a storm this is. How wonderful that God loves us and keeps his promises. always. ~ Keren

January 18th ~ And So It Begins ...

Over the holidays Steve began having what was, basically, an extended abdomen. He was joking that he was getting a ‘pot belly’ and that he needed to go on the “Flat Belly Diet” he’d heard Jenna talk about. We were at a party for his old high school friends , and his good friend who's an ER doctor in Long Beach took him aside, did an informal exam, and told him to get in to the Dr. immediately.

He was diagnosed with “ascites” which is fluid in the abdomen. Over a few days they drained 8 liters, with a couple more liters left in. The bottom line is that after a week and a half of further tests to determine the cause of the ascites, he’s been diagnosed with pseudomyxoma peritonei, an extremely rare form of cancer that originates in the appendix, and impacts the abdomen and the lining of the abdominal cavity. At this point Steve is scheduled for another ultrasound and we have an appointment to meet with the oncological surgeon on Tuesday. At that point we explore the options of finding a doctor who is experienced in in the treatment of this very rare form of cancer.

They need to get in there to know just how much/where it is, so at some point within the very near future he’ll be undergoing an extensive surgery and we’ll certainly keep you posted before that happens. He’s in no pain whatsoever and is actually feeling pretty good, though tired, but this is a lot to take in and process so quickly.

One interesting thing is that, after months of waiting, at the almost exact time we were getting word of Steve’s test results, Brian and Jenna were getting the news that Brian had been accepted into Test Pilot School @ Edwards AFB, and they’ll be moving here next Jan.

I can’t stop being thrilled at God’s impeccable timing in giving them the news at the same time we were getting this other news. I call these ‘faith builders’ .... Clear gifts, (like the timing of the news) from God and a reminder that He indeed loves us and is at work in our lives. ....what a GREAT time to be reminded of this!

I know friends and family will be holding us up in prayers, and I thank you for that.

We'll keep you posted as we go along.

~ Keren