In the Home Stretch

Good morning all! I am getting my final treatment, the last cycle of four. I am doing well, with minimal side effects. I feel good and have no pain.
I was able to get cards written and finished a novel just in the first 2 days here. There isn't much else to keep one busy when you are tethered by IV tubing and a pump.
I do check my email and the blog daily. It's nice to know who is reading this stuff. (Although I don't know who's out there if you don't comment on the blog!)
I am looking forward to a peaceful Christmas with family and friends. Haven't done anything in the way of shopping for gifts. I'll be writing IOUs to everyone!
The follow up to this chemo will be surveillance with scans, which will start after the holidays. I guess at some point I will have to get myself back to work. By then the biggest hulabaloo should be over with the swine flu vaccine. I can only hope...
My best wishes to all for a very Merry Christmas and a blessed and healthy new year!
Till next time...:-) Bets

Sending monarch butterflies

As anyone who follows my blog regularly knows, Tom and I have been going to Cambridge every chance we get to allow for some R&R. About a month ago, on one such weekend, as I sat outside enjoying the beautiful view and perfect warm weather, I began praying to thank God for all the good things in my life. As I prayed, I started talking to my Dad and Tom's Mom and Dad, and my brother and sister. (all of whom are deceased; now I don't know how you feel about talking to dead people, but I believe they hear us and can answer us!)

Well this day, I asked (in frustration) for a response to whether or not I was heading in the right direction as far as my treatment was going. I asked for "anyone, someone to send me a sign if I was moving in the right direction." "Send me monarch butterflies!"

On Saturday, Tom and I drove to Cambridge to hold a 'ground breaking' celebration before our foundation goes in this week. It was just a little photo op for posterity. As we stood in the middle of the site with shovel and camera in hand, there appeared a monarch butterfly which landed right in the kitchen area!

My answer can't be any clearer!

Till next time! :-) Bets

Second successful week!

Just wanted to let everyone know that I am home after my 2nd treatment. Things went about the same; a little nausea controlled by medication and few other side effects. I am feeling a little weak and dizzy when walking, but hopefully will gain strength when my appetite returns. I am soooo glad to be home!
Tom and the boys are doing well also. Tom is planning a trip to Cambridge for the Veteran's day holiday next week. I am looking forward to that (to recharge my batteries!) Kevin and Andrew are finishing up with midterm exams. Andrew is going to Virginia this weekend for certification in Scuba diving. He is really looking forward to that. Kevin is caught up in football and the World Series, following the Patriots and the Yankees. Looks like the Yankees are headed for a win... we'll see tonight!
My next admission is planned for Nov 16,2009. That will be my third cycle with one more to go. I should be recovered enough to participate in some holiday fare the following week. (Family members :Get your flu shots for seasonal flu and H1N1 now so no one brings anything with them to share for the holiday.)
Till next time... :-) Bets

Hi all!

I have been at home for the last 3 weeks, getting stronger and healthier every day. I spend my days reading, praying and baking, as my body tolerates. So far I have been able to totally avoid daytime TV!! I have also been avoiding going to places with lots of people as I am more susceptible to all kinds of germs, especially Swine Flu!

I will be going into the hospital again on Monday morning for the next (2nd of 4) treatment. I will probably be there through Friday.
Tom and the boys are doing well through all this and have been very supportive. Ginger and ZuZu have also been behaving. ZuZu has been enrolled in pet training class @ PetSmart and she seems to be catching on. I hope that her behavior continues to improve while I'm in for treatment this week.

I continue to ask for prayers for remission. I thank you for your support and encouragement. I will keep you posted as this treatment progresses. Till next time :-) Bets

Sunday Afternoon...

I am home as of 2PM today. I'm a little tired and "foggy" but iI am okay! Minimal nausea and I"ll stay on top of that with medication and rest. Can't tell you how good it feels to be home! I would welcome visitors at any time, so don't hesitate to stop by if you are so inclined. I will be home for 2 weeks, then return for the 2nd round of chemo. Pray that it will go as well as this past week, which had it's ups and downs but all in all was not terrible.

Tom and the boys have kept me posted about all your good wishes and prayers. I do appreciate them all. I was disappointed that I was unable to attend the special parish mass for our 10th anniversary celebration. I was truly looking forward to being among all who have offered so much to my family and me over the last ten years. It is a community like no other, and I am proud of what we have built together. Thank you from the bottom of my heart!
Till next time :-) Bets

Maryland Superfund Cites

After almost five days of continuous Chemo, Betsy is toxic enough to be added to the list of Maryland Superfund Sites . I'm not kidding, her assets are more toxic than sub prime mortgages.
We're in the home stretch though, the last bag ifosfamide is due to finish up this evening then Betsy's system will be flushed. Maybe Bets will come home tomorrow.

I'll keep you posted.

Said Tonto to the Lone Ranger....

How 's Chemo sabe?

Betsy checked into Mercy Hospital yesterday for her first of four rounds of Chemotherapy. The two drugs being used are Cisplatin and Ifosfamide. The Cisplatin is being broken up into a couple of doses. Betsy had one yesterday and will get another today. After the Cisplatin the Ifosfamide will be administered continuously for three days . That's why why this and the subsequent rounds will be administered on an in-patient basis.

Betsy is doing fine.

I'll keep you posted as thing go along.

The latest...

I thought I would let everyone know that my 3 week post-0perative visit went well yesterday. Everything is healing well. I am still very tired and tire easily with minimal activity. Dr. Sardi said it would take about 2 months before I start to feel myself again. I just have to give it more time.

We will be discussing follow-up with chemotherapy in about 2 weeks. Dr. Sardi will be consulting the medical oncologists to decide what chemo to use on this rare type of cancer.

In the meantime, Tom and the boys are hanging in there. They are all pulling together to maintain some normalcy around the house. Andrew and Kevin have started back to school, and seem to be off to a great start. As a matter of fact, Kevin started his culinary arts program, and has Thursday as a cooking day. Last week he brought home 2 fresh bagets and focaccia. I can't wait to see what he brings home today! Andrew has a pretty heavy schedule for the fall. He is also continuing at NSA 20 hrs per week.

I will continue to rest and recover. Prayers, calls and visits are appreciated. Till next time... :-) Bets

So here's what's going on

As noted below, Betsy was discharged from the hospital last Wednesday evening. I am very happy to report that her recovery is slow and steady, in short it is proceeding well. Besty is as ambulatory as can be expected after such a major procedure. Up and down the stairs once a day pretty much wipes her out. We have been extremely fortunate with he home care so far, last Thursday her sister Margaret, an R.N from Delaware, was with her and on Friday another sister Tennie, an R.N from Long Island came down and will be with us until Tuesday.

Betsy is doing her very best to get back into a routine, though the regular day-to-day things do wear her out. It will be awhile before she has a lot of stamina, but for someone less than two weeks post op she is doing amazingly well.

Thanks you all for your prayers and all of the meals that many of you have prepared for us. Both greatly sustain us and we are most grateful.

That's it for now.

And the answer is....

HOME. Need I say more.

You Gotta Read This!!!

If you thought at the post below "This just in" was good news. You gotta read this.

Dr. Sardi saw Betsy earlier this morning. He said if she does well with her breakfast and lunch he'll let her have dinner with her family. We aren't talkin' about taking her one floor down to the Mercy Bistro, this would be the real deal, that's right boys and girls we'd be taking her on a road trip ---out of the hospital!

The best part of all is that our destination will be ________.

If you could pick a place for us to to take Betsy to dinner where would you go? I know where we're going and will tell you later. In the meantime take a guess and as always please continue with your prayers.

This Just In

Dr. Sardi told Betsy today that if she continues to progress the way she is, she may be discharged from Mercy this Friday. Please spread the good word and keep the prayers coming.

Progress Report

Betsy continues to recover well.

One by one the various tubes and drains are being removed. The next big milestone for Bets will be when she passes gas. The caregivers have heard bowel rumblings with a stethoscope, but what they need is that unmistakable sound of flatulence. During surgery Betsy's intestines were thoroughly examined and all of that manhandling totally disrupts the natural order of things , so the best indication that all's well in the bowels is a good old fashioned fart, you'd think that with all of the gee whiz stuff available today there would be some other performance measure.

Betsy's pain is at a tolerable level, she's been walking several times a day and has been working with a physical therapist on various exercises and techniques for sitting down in and getting up from a chair or bed. It's not easy but Betsy is tolerating it all very well.

Stay tuned for updates.

What can we do to help?

I am very thankful for all of the prayers and good wishes that everyone has conveyed to all of us during this trial. Often those good wishes are coupled with an offer to help and I'd like to accept that offer. Betsy still has a ways to go and will likely be in the hospital for another week or so. Dr. Sardi and his team highly recommended that if family and/or friend could be with Betsy during the night their experience shows that this greatly speeds the recovery process. Since Betsy 's return from ICU to a regular room we've been able to have someone with her. I was with her Friday night and I'll be there again tonight. I'll gladly do every other night.

The duty doesn't require any medical background, just the ability to rearrange a pillow here and there or help Betsy get out of bed if she needs to. Having someone there is very reassuring to Betsy as well. There's a nice fold out bed and the staff is very happy to supply fresh linens.

If you are willing and able to spend the night with Betsy please let me know. Either leave a comment on the blog or send me an email: trekus@gmail.com

As always please keep the prayers and good wishes coming.

Let the games begin

I spent the night at Mercy. It's not like staying at the Hyatt, but it was better than some places I've slept when camping.

Like every other hospital the staff was in and out a couple times during the night, but that didn't seem to bother Betsy. Always the total professional she told me she dreamed about flu clinics.

Around 730 and occupational therapist came and provided instruction and some tools that will aid Betsy in doing some tasks,like putting socks on, that we take for granted, but which will require a bit of effort for her during her recovery. That went well.

Next up is a morning walk. I'd like to go down to the Inner Harbor, but suspect that our stroll will be limited to the 7th floor here. The goal today is 3 laps around the floor -- they don't have to be consecutive. Tomorrow it's going to be 4 laps and Monday five. The Physical Therapist must be a former Airborne Ranger Special Forces type cause she is all business.

All of this activity will help get Betsy's guts back in place so she can start to take in real food.

Stay tuned and keep the prayers coming.

I'm walkin' here

Today the staff had Betsy up and walking around the Unit. For her, just like Ratso Rizzo, it was a struggle, but she’s glad that she did it. She also spent a significant amount of time sitting out of bed.

Her mom and her sister, Margaret, paid her a visit so that they could see for themselves how well Betsy is doing. They will be heading up to Long Island for a family gathering this weekend so they can relay their observations to the rest of Betsy’s siblings and extended family there. With a name like “Thomas” I can certainly appreciate their “seeing is believing” posture.

An other visitor was a medical oncologist Peter Ledakis, M.D. Once all of the pathology of Betsy’s tumors gives insight to the particular cancer Betsy can anticipate some follow up chemotherapy.

Betsy says she feels great and her pain is tolerable, in all the time I‘ve spent with her I haven’t seen her push the pain button once, so things must be good.

That’s pretty much it for today. Please keep Betsy in your thoughts and prayers.

Out of ICU

As I was going to Betsy’s room in ICU this afternoon the staff told me my timing couldn’t have been better to help move Betsy down to her room. At first I though they were speaking to someone else, but when I got to Betsy’s room there she was in a wheelchair all ready to go. In fact, she had been out of bed since mid morning. She spoke with her sister Margaret and even called home to check in with Kevin. Amazing.

Once we were settled into her room we had a visit from Nick, one of Dr. Sardi’s Physician’s Assistants (PA). He saw me giving Betsy water from a little sponge on a stick and asked Bets if she'd like to have juice instead. Bets opted for water, he left and returned with a large cup of it, which she proceeded to drink—on her own. This may not seem like big deal, but I gotta tell you, for 36 hours post op this is HUGE.

Andrew, Kevin and I are truly amazed with her recovery. She told us that, relatively speaking, she feels great and her pain is tolerable. She didn’t believe me when I told she looked great, that is, until I gave her a mirror.

We can’t help but compare this recovery to her past one. But it’s really like comparing apples to oranges since Betsy was in far better health, mentally and physically, going in to this.

Betsy has earned a good night’s sleep and tonight she is going to get one. So are we.

Stay tuned, tomorrow’s activities will have Betsy up walking. I’ll be there and will keep you posted. Also, I learned a whole lot more about the procedure from PA Nick and will share that with you. Stop back often and please continue those prayers.

Odds and ends

I’ll be checking in on Betsy later today and will post an update on her condition later.In the meantime I thought you may enjoy reading excerpts from various emails and comments shared by friends and colleagues.

From GG, a lifelong Baltimore native “Does eating crabs metaphorically work for consuming cancer?”

From CM, a Baltimore native now in Atlanta “please doesn’t tell me crabcakes aren't part of that chemo diet.”

From JM, a former colleague of Dr. Sardi, “I’d let him take my brain out and put I back in.”

Someone asked "What's with the hammock? Simply that's the carrot in front of the Donkey. It's where Betsy enjoys hanging out when she's at "A Shore Thing".

I was also asked to explain a little more about Betsy’s procedure. Following surgery to remove any visible tumors, Betsy was connected to a series of catheters and a pumping device that bathed the entire abdominal cavity with the chemotherapy drugs for approximately two hours.The high temperature of the solution has been found to increase the drug's therapeutic effect. The fluid goes throughout the abdomen to treat any tumor cells that may remain after surgery. Both heat and direct contact with chemotherapy drugs kills the cancer cells. Here's an animation of the process.

Evening came, morning followed

It was a little after 11:00 PM when Dr. Sardi finished up with Betsy and gave us a run down on how things when. In short things went fine, he removed a lot of tumor growth while keeping various organs in tack. Given the amount of material he was very surprised that Betsy was feeling as well as she was. It was after midnight when we very briefly saw Bets in the ICU. She was quite zonked out and hooked up to all manner of equipment but looked great - or at least as good as anyone can given the circumstances.

I'll see her later and will put out an update then.

Kevin was kind enough to write this up for me: This afternoon Andrew Dad and I took a trip up to the hospital to pay mom a little visit. When we got there mom very sleepy from all the medication. The nurse said that earlier in the day mom had sat on the edge of the bed. Not even 24 hours after the surgery and shes making progress. Mom looked great but we could all tell that she felt bad. More information to come.

The Main Act

At 0600 this morning Betsy went down to the preop area. We met with a number if the team members and reviewed the procedure. At 0745, right on time, Betsy went off to the OR. I'll be contacted often during this marathon event. I'll keep you posted.

At just about 0900, Anita the OR nurse reported that the urologist had placed ureteral stents, the anesthesiologist had inserted several lines and Betsy was cradled in the arms of Morpheus. Just moments before her call, Dr. Sardi started surgery. I'll hear more around 1130.

As of 1130 Betsy is doing fine. The next update will come at around 2:30PM.

As of 2:30 Besty is still doing fine. They're taking out cancer cells,as expected. The next update will be at 4:30 PM.

As of 4:30 Besty is still doing fine and cancer cells continue to be whacked.

As of 6:00 PM the team is prepping for the Chemo treatment. So by 8:00 PM they should begin closing. I'll be heading up to Mercy about then so I can catch up with Dr. Sardi when he's done about 9 or so. I'll then catch up with Bets in ICU.

It's doubtful I'll be doing anymore updates today.

Gotta Love Baltimore HON!

For the time being it’s up to me to bring everyone up to speed. I’ll start out by saying that Betsy is now checked in to Mercy Medical Center in downtown Baltimore. Today Betsy will go through a number of things to prepare for the big show tomorrow; more on that later.

One of the pre operative procedures actually occurred last Monday when Betsy had an inferior vena cava filter installed. Briefly, an inferior vena cava filter is a medical device that is implanted into the inferior vena cava to prevent fatal pulmonary emboli (PEs). After surgery Betsy’s mobility will be severely diminished for several months, so to mitigate the risk of a PE (of which I have first hand experience) essentially his filter breaks up clots before they get to your heart and downstream into the lungs or worse, the brain. I want to extend kudos to radiologist Robert P. Liddell, MD for his exceptional explanation of the procedure and to the radiology/imagining staff for their attentiveness.

Since then Betsy has been getting her ducks in a row for an extended absence from work. I know that this time away from work will be hard on Betsy. With the seasonal flu fast approaching and the swine flu (no political correctness here) pandemic already putting added demands on the health department staff, Betsy thinks the timing of her hospitalization just sucks. Of course, we all think that reason for her being here in the first place sucks even more. On a side note, when Betsy was admitted this morning they asked if she had gotten a flu shot, with great pride she averred that she had, explained what she did for a living and put a plug in for the program.

I’m won’t go into a long litany of the today’s festivities. Suffice it to say the pre surgical routine involves ingesting a fair amount of clear liquids and Gin&Tonic isn’t on the list.

The game plan for tomorrow is for Betsy to depart her room at 0645 with Armando Sardi, M.D. starting surgery promptly at 0740. Dr. Sardi is one of the select few surgical oncologists in the world who employs the leading edge procedure Intraperitoneal Hyperthermic Chemotherapy(IPHC) to treat advanced stages of abdominal cancers.

IPHC is an aggressive surgical treatment reserved for patients with peritoneal surface malignancies. The procedure, which can take up to 15 hours to perform, combines the extensive removal of cancerous tumors with a highly concentrated dose of heated chemotherapy applied directly to the peritoneal cavity.

There’s no one resource like Wikipedia that I can point you to for more info on IPHC.

After surgery Betsy will spend some time (estimated at a day or two) in the ICU then will be moved into a regular room. I’ll let you know the particulars when the time comes but if you haven’t planned a vacation yet come to Charm City where you can get a crab cake and VISIT BETSY, go drinking in Fells Point and VISIT BETSY, stop by the National Aquarium and VISIT BETSY, swing by the Shot Tower and VISIT BETSY.

That’s it for now, Please keep Betsy in your prayers and stop back often for updates.

PS: At last count there were ten different disciplines that met with Betsy today. Areas covered ranged form Pastoral Care to social work to pulmonary therapy, to nutrition and a bunch of other stuff. There's quite a team behind this so when you think or pray for Betsy please remember this group who do this work day in and day out.

Save the date!

Latest update is that I will be having surgery on Tuesday 8/18. In the meantime, I am taking it easy. We are spending most weekends in Cambridge.
Tom and the boys are good and doing all they can to help out as needed.
Till next time. :-) Bets

Phase II update

Good morning all!

I've been to 3 different doctors getting opinions about what to do and which treatment will be best for where I am now. A CT scan of my chest (done this past Tuesday) was clear! As a result, I am eligible for surgery and chemo again. I have chosen to change doctors.
I will be having surgery sometime in the next 3-4 weeks @ Mercy Medical Center. The surgical oncologist there specializes in rare and unusual tumors of the abdomen. He has been very encouraging and feels that I should respond well to this treatment. He told me I was young (Love it!) and healthy and should do very well.
Please continue to keep all of us in your thoughts and prayers.
Thank you all. Till next time...:-) Bets

Phase Two

Hi all!
I know it's been a while since I"ve written anything in the blog, but there was nothing new to report. The spring was good with my energy returning, my CA125 @ 2 or 3 every other month, and no evidence of disease.

About a month ago I started to experience minor intermittent discomfort in the abdomen. Nothing was consistent, and I thought it was scar tissue from all the surgery I had been through one year ago. (Yes it has been a year in May since this all began!)

Needless to say, I returned to the doctor and had an MRI and some blood work done last week. My CA125 remains @ 3, but the MRI showed tumor grow in my abdomen. It doesn't appear to be invading any organs at this point. That's a good thing! So I will begin again in this fight to overcome this insidious disease.

Please keep the Rekus family in your prayers. I don't know when things will happen, but I will be going through surgery and chemo again. I know the power of prayer will get us through this again! Thanks.
Bets

New Year, New You!

New Year's Eve we had our usual dinner party, with dear friends from New York and Baltimore who come every year. (This was our 21st year.) This year was a little different... Our friends from Baltimore brought Chicken Chesapeake, YUM! Also this year our friends from Texas surprised me and arrived in time for our celebration. It has been 16 years since they were with us for NYE. What a thrill it was to see them. We were able to spend some time visiting with them on NY day as well. It was a great way to start a new year!

Two weeks later, I went to NIH to be screened for a study of ovarian cancer. (It was primarily to watch closely for certain protein markers, to indicate the return of the cancer .) Well I was not accepted into their study group, because I don't have the type of cancer they were screening for. I have "primary peritoneal carcinosarcoma". It is a rare mixed cell cancer and there are only 29 people in the liturature worldwide with this type of cancer! Lucky for me that my oncologist followed the recommended treatment which is to treat it the same as ovarian cancer.
You never know what life has in store. So I am going to live life to the fullest, as long as I can. My CT scan showed no evidence of disease; my CA125 (marker) is still @ 4. I am feeling well, getting some energy back and growing some hair!

We have a new addition to our family, in the form of a 4 month old Shih Tzu puppy. She is a bundle of energy and is giving us all a run for our money, including Ginger!(our 10 year old Shih Tzu) She is adorable; we call her ZuZu (from It's a Wonderful Life.) Everyone is adjusting nicely, including Tom!

I will keep in touch monthly to let you know the latest news. Next month I will try to get some pictures of the dogs onto the blog for all to see. Stay well and continue to pray that this remission lasts for many years. Till next time :-) Bets