Where the heck have we been??

My sincere apologies! After my last 'cliff-hanger' post, I decided to send the next update by email. I THOUGHT that I knew of all who were following this blog but I think I may have missed a few. So - here is the email that I sent following Judy's PET/CT scan back in April. More has happened since then as I will detail after this:


Good Day!
I know that many of you are waiting anxiously for some news today. We are so happy….ecstatic….and elated to report that the large cancerous tumor that Judy has been treated for over the last 9 months, is dead. There is, however, a new, very small, spot on her liver. The doctors are VERY confident that they will be able to remove this spot without incident. This procedure will probably be sometime in the next week or two.

I will be sure to expand on this information and our/my feelings about it later, on my blog.

Thank you all for your support and prayers thus far. We wouldn’t be where we are without them. Keep them up!

God bless you all!

Chris

Well! I guess I wasn't so SURE about my need to expand my FEELINGS on this blog...I'll try, but first let's bring the story up to NOW:

After we got the results of the scan, we were so relieved and happy. But we did still have some work to do. The follow-up procedure for the 'spot' on her liver was scheduled for the following week. Let's talk about the 'spot'. Under normal conditions, the 'abnormality' or 'lesion' that they could see on her liver would need to be identified prior to treatment. Meaning, if one had no previous health condition(s), and just happened to have a scan done that showed this type of 'spot', the Dr.'s (and patient) would want to know what it was first and THEN decide what do to about it. Because of Judy's illness, it was every one's assumption that it was a cancerous tumor. She has cancer in the area, it is thought to be a metastatic cancer, blah blah blah. So, in the interest of avoiding ANOTHER procedure (a biopsy), we all decided to move forth and treat it as if it needed to be removed asap.

The way it would be treated was similar to how her original tumor was first attacked. Dr. Charlie would do what is called RFA, or Radio Frequency Ablation. Where the first time we used extreme cold, this time we would use heat and cook it. The tumor was in an area of the liver with plenty of good tissue around it. So a probe was inserted, the heat turned on, and the tumor, plus a good margin around it just be sure, was killed.

Afterwards, Judy was moved to a room for observation. The room was on the 12th floor where we had spent almost two full months. Many of the nurses who cared for Judy during January and February were able to come in and visit. They were all VERY excited to see her doing so well. Her Oncologist told her that it was a real morale boost for them. They just don't get to see this kind of turnaround very often. Most of their patients, sadly, don't ever get better.

A couple of weeks after this procedure, Judy went back in for a follow-up scan to see the results of the RFA procedure. The scan was clean but it did catch another problem that needed to be dealt with. Judy has some collateral issues relating to all of this treatment which I usually don't go into - it's all more than most want to know about I'm sure. You can imagine though, that after having seven probes inserted into your abdomen creating a large -120F ice ball in an attempt to kill a tumor almost 2L in volume, then giving birth to twins, then having six weeks of massive amounts of radiation with a dash of chemotherapy and a subsequent burning probe to a liver tumor, that you MIGHT have a few other issues in that general area, yes? Suffice to say, one of these other issues cropped up and Judy had to spend another few days in the hospital but all went as expected, which is all you can ask for most of the time.

Our next scan is set for the July 13th. We will meet with the Dr. on the 17th to review the results.

I have posted many new pictures on Facebook. Check them out!

Chris

The time has come

Tomorrow is a big day. It is the first scan of Judy's tumor area since her radiation treatment ended. Originally we (our Dr.'s and us) had discussed doing this scan at 4-6 weeks from the end of radiation. We later decided to push it out to 8 weeks, just to make sure the radiation had time to finish it's job. The scan is a PET / CT, which means it's actually two scans. First they do the CT then they do PET scan. They overlay them in order to get the best possible look at what's going on.

Please. Pray for a decisively clean scan. We are looking for NO cancer activity.

We will not know the results of the scan until Friday. They results will be back sooner, but our appointment is not until then.

And we're off! ...like a herd of turtles...

We've been home for two weeks now. Judy has been getting a little better every day. The progress is slow, but it's progress. She is still battling the nausea, but is able to eat well. She has started physical therapy and is moving more every day. It is a long road ahead still, but we're going down it - slowly but surely.

Home Sweet Home

A little know fact from the animal kingdom: Bad Gnus often follow good gnus around wherever they go, trying to get them in trouble.

The good news, of course, is that we are indeed finally home from the hospital. Yay! Apparently though, our journey is not yet destined to smooth out. Since returning home yesterday in the early afternoon, Judy has been very sick. Nausea. The kind that makes you not want to breathe, let alone move...or eat. So, we got that going for us, which isn't nice.

Hopefully, she's just feeling the continues effects of radiation treatment. If that is the case, then she should continue to feel better every day. Here's hoping!

One more night?

Well, it looks like after 55 days, 30 radiation treatments and 6 weeks of chemotherapy we are finally going home. As early as tomorrow, Judy will be discharged. She has been steadily recovering from the high dose radiation 'boost' they gave her last week. Yesterday she had one final minor surgery from which she has recovered beautifully. Because of that and her continued strength, they are set to discharge her. I'm holding my breath a little because it always seems like as soon as I say we are coming home, something happens to delay it. But it really looks good - all of her doctors have already signed off so it's only a matter of getting paperwork in order and prescriptions, etc. in place.

It will 6-8 weeks before they will scan again to see the state of the tumor.

One more week?

Today Judy began her boost treatment plan which will conclude this Friday. She will also get one more dose of chemo tomorrow. She has been doing well, overall. The time off from radiation allowed for much internal healing. She got stronger. She ate and moved more than she had in many weeks.

If all goes well, we will be able to go home as early as this weekend.

New Plan

If there’s one pervasive truth experienced in the hospital, it’s that nothing ever happens in the timeframe you expect it to. I know this and thought it even as I typed the final line in my last post. As you may have guessed, going home this week doesn’t look probable.

Judy’s final treatment of her initial radiation ‘plan’ was actually last Friday, not Monday as we had initially been told. The tumor has been responding well to the treatment – ie, it’s shrinking. Since Judy seems strong enough to continue, the doctors have decided to give her 3-8 (probably 5) more treatments of very focused radiation. They will ‘map’ this plan tomorrow, Wednesday February 18th. Treatments will begin Thursday or Friday. In the mean time, Judy is working on getting strong enough to come home. If this happens soon enough, she can finish the new treatment plan on an outpatient basis. If not, we'll be here until she finishes her new treatment plan which will be late next week or early the week after.

January

Georgia

Stella

I got the call on Wednesday, January 7th 2009. The girls were ready to come home. We were so excited and SO unprepared. What a difference from the arrival of sweet Leo. We were completely prepared for him weeks in advance. We had all our supplies stocked up and his room was all ready. This time, we didn’t even know where the girls were going to sleep! Well, of course we figured all that out and I brought our babies home at about 8pm for their first night out of the hospital. We were all so excited – especially Leo. He only got to see them once in the NICU so he couldn’t wait. The night went very well; the girls ate twice at midnight and 4am and both times went right back to sleep. Again, a much different experience than our first. (we were back in the ER with Leo less than 24hrs after we left…but that’s another story). We were settling in and figuring out our new routine. Unfortunately (man, I’ve used that word a lot), we didn’t even get a chance to get our bearings…

When Judy was discharged from the hospital the previous Saturday, we were given a list of things to look out for that would require us to return immediately. On Thursday afternoon, less than 24 hours after our girls came home, Judy experienced one of these warning signs. Within the hour, we were back in the hospital.

We are still here.

We came into the ER and were soon met by one of our favorite doctors. Just prior to that, the ER doc did his standard assessment and orders. In talking to him about Judy’s case, he realized that he got the call from the paramedics the night of Stella’s dramatic arrival. It’s common for paramedics to need doctor’s orders regarding the patients they are attending to. ER doctors are on call for these appeals for assistance. What a small world it is that we were now being treated by the same doctor that assisted our favorite paramedics! Judy was stabilized and admitted. Unfortunately(!), the hospital was completely full so we were moved to the ‘transition’ area. We were of course familiar with this place – as we are with most areas of the hospital. With no beds available and dozens of people needing rooms, we were in for a long wait. The stalls are small; only enough room for a bed and a stool. I spent the night in Judy’s wheelchair with my head against the wall…comfy!!

We had an appointment scheduled for Friday morning for a full PET / CT scan. (Originally, we were going to do this scan back in November. After the Cyro, Charlie suggested that we do this scan in two months to see what, if anything, the tumor was doing. We decided against the test back then for a couple of reasons. One, we were already dealing with so many other things, that a long difficult trip the doctor was not appealing. Two, no matter what the test showed, we weren’t going to ‘do’ anything differently than what we were currently doing.) Now that the girls were safe, it was time to scan and see what the tumor was doing and if there were still no signs of other sites. The appointment was for 9am, but we had been stuck in the hospital transition area all night and 9am had just passed. Just then, our oncologist showed up for morning rounds. We decided that we should move forward with the scan and so with a quick phone call, transport came and wheeled us to the scanning department.

While we were gone, our oncologist pulled some strings and got Judy a room in the bone marrow transplant area. These are the nicest rooms in the hospital. They are larger than any other, with a vcr/dvd player, a large movie collection and beautiful views of the surrounding mountains. They also have two sets of doors needed for the extra sanitary environment required by transplant patients. A side benefit of this is a much quieter room. All of these things have made the last 5 weeks at least a little more comfortable.

Later that day, after getting settled in what would be our home away from home for more than a month, we got the results of the PET/CT. The tumor had grown considerably. However, there was still no sign of any other tumor sites. The growth of the tumor was what had caused all of the issues with Judy’s kidney and of course, the source of her continued pain, but at least it was still contained in the original area. The course of treatment for a carcinoma of this type is, as I may have mentioned before, radiation with a little chemotherapy to make the cancer more radiosensitive. The amount needed, we were told, shouldn’t cause hair loss or other major side-effects normally associated with chemo.

We had known that this would be our course of action if the tumor remained. Because they were treating Judy’s other issues, it was decided that Judy would begin treatment Monday morning on an inpatient basis. The plan was that we would proceed and when Judy’s other issues stabilized, complete the treatment on an outpatient basis.

The treatment plan was set for 5 weeks. Judy would receive radiation 5 days a week, Monday – Friday and Chemotherapy one day a week.

By this time, though, Judy’s pain was extreme and in addition to the issues relating to her kidney, became a main focus of treatment. It will come as no surprise to anyone that after a couple weeks of radiation, several months of being virtually bedridden and high doses of pain medication, Judy was extremely weak. It was becoming clear that we would probably not be able to go home before her treatment was completed.

Day after day, Judy bravely battles the fatigue, nausea and other side effects of her treatment. After 2 weeks of treatment, they scanned the tumor and found that it had shrunk about 30% in volume. We were all very excited to know that the treatment was working. A subsequent scan last week showed the tumor to be less than 50% of it’s original size.

Judy’s last scheduled day of radiation is this coming Monday the 16th. At that time they will decide if any Judy would benefit from one or more “boost” treatments. The consensus is probably not, but we shall see. After the final treatment, Monday or otherwise, we will have to wait 4-5 weeks before scanning the tumor site again as the radiation continues to work.

Hopefully we will be able to go home sometime next week.

Complications

The vast education and training an MD receives may actually be more focused on complications. Procedures themselves are fairly straightforward. What can happen after a procedure is wide ranging and complicated.

After Judy’s procedure that would drain her kidney of the backed up fluid, her doctors watched her closely. She showed some signs of complications and so was admitted. Over the next several days they chased the symptoms with test after test and drug after drug. Christmas was approaching and we were anxious to get home. Day after day, all the tests were negative. It was decided that we could go home for Christmas, but must return the following Monday so they could continue to monitor her. We went home Christmas eve and spent the next 4 days with our family.

The following Monday morning we were back in the hospital where would stay for another 6 days. All the same tests continue to be negative for any serious complications. Given Judy’s medical issues, they can’t be too careful. Several symptoms of possible complications persist, but with negative results we head home again.

During this stay before and after the New Year, daily reports from St. Joe’s point toward an early release of our twin girls. The girls have been thriving and with no complications. All of the doctors and nurses at the NICU are amazed by their progress. They are very close to meeting the requirements for discharge: self-maintaining of body temperature, gaining weight and eating full meals by bottle. These are two very strong little girls indeed. Not only did they survive a very turbulent beginning with many dangerous tests and medications, but they thrived almost as if they were full term.

However, with Judy being in and out of the hospital, the prospect of having the girls home so soon raised much concern. How would we continue to find enough help to watch Leo AND two newborn twin premies?

Merry Christmas...

After the girls were born, Judy spent little time in the hospital. She seemed to be doing fine and wanted to get home to rest and recover. We were all very anxious to see if her pain would recede with the pressure of two babies now gone. At first it did seem as if this was the case. But not really in the drastic way we expected. We followed up with our doctors and it was decided that we needed to do an ultrasound of Judy’s leg to see if the blood clot had broken down. She was still on daily blood thinners and we needed to know if continuing them was still necessary. It had been about two weeks since the girls were born and we were eager to get moving with Judy’s recovery. I called Charlie to let him know we’d be in his department and requested our favorite ultrasound tech. She’s the head tech and she knows us. Thinking this would be a quick scan we brought Leo with us (and his babysitter). As we waited to be called back, Charlie came out to see us. We hadn’t seen him since leaving the rehab center and so a cheerful reunion ensued. Judy was so happy to see him and he was very positive about her recovery.

After scanning her leg, the tech moved up to the tumor area to have a look. She spent quite a bit of time doing this. It’s always unnerving when a scan takes longer than you expect or know it to take. What she found was that Judy’s kidney was severely swollen. The tech had us wait so she could show the images to Charlie. One of Charlie’s partners came out to discuss the situation with us. He strongly suggested that Judy get a CT scan right away and possibly have a drain put in. They needed the CT to get a better look at what was causing the swelling as the ultrasound was not detailed enough. He told us that it was urgent but not emergent. We had been there a few hours and Leo was getting upset. We went ahead with the CT, but decided to go home right after and schedule a follow up as soon as possible.

Charlie called me at 7:30 that night. After looking at the CT he wanted Judy back right away. Her kidney was in bad shape and waiting to do something about it was not a good option. We agreed that the following morning would be soon enough. He suggested that it would be a fast procedure. They would put a drain in and send us home. Then we would come back in a couple of days and they would pull the drain out and correct the issue that was causing the swelling. We were supposed to be in and out in an hour or two…

Six and a half hours later they decided that they needed to admit her. This was December 19th.

Bourne....twins born

In the early hours of December 1st, 2008 I happened to be awake. Earlier, I had fallen asleep in Leo’s room after putting him down. I strolled back to our room around 1:30 or 2am and, of course, was then wide awake. Judy was in and out of sleep with the TV on. I crawled into bed, turned the light off and commandeered the remote. The room was much dimmer now, with only the flickering light of my channel surfing and so Judy slipped into a more normal state of sleep. I made my way to the HBOs and settled on The Bourne Supremacy. Unfortunately, I did not feel remotely close to falling asleep. I suppose this was by design…

At 2:30 out of a dead sleep, Judy suddenly shrieked, “oh my God!”. She sat up. I figured: nightmare. “I think I wet the bed!" she exclaimed. As she got up, I inspected the area. This was no accident. I called Monique and left a frantic message. She called me back in less than two minutes. She confirmed my suspicion that Judy’s water had broken and told us to head to the hospital. Since there didn’t seem to be any previous or current contractions, she thought that they would be able to prevent labor from happening and Judy would spend a few more weeks in the hospital before giving birth. As we waited for my mom to arrive to watch Leo, things progressed quickly and we realized that she was definitely in labor. 15 minutes later, my mom arrived and we got Judy back in to bed only to realize that the first of the twins had decided it was time to come out…literally. And, since nothing around here goes as planned, she also decided to come feet first. I quickly called 9-1-1 - in disbelief of my daughter Stella’s 10 wiggling toes that had made their way into the world. I think the 9-1-1 operator was trying to coach me through delivering. It’s hard to remember. It was all happening so fast and yet so slowly. My mom was right in Judy’s face. Telling her everything was going to be okay. Telling her everything she needed to hear and exactly how she needed to hear it. Judy recounts that mom’s help was precisely what she needed. The paramedics arrived in minutes. It was a surreal scene in our bedroom for the next 10 minutes. Our house was filled with firemen and paramedics coming in and out. Jumping up onto our bed to start an IV; trying to help Judy give birth to our children. The ambulance arrived about 10 minutes later. Still, only Stella’s feet were out. Judy was lifted on to the gurney and wheeled out of our house. My brother Matt had followed my mom over and was there to stay with Leo. I passed him on our way out. I don’t believe any words were exchanged…just the look of bewilderment that neither of us could believe this was really happening. They loaded her into the ambulance. I jumped in beside her as paramedic Mike Bruno continued to try and deliver our little girl. As we flew down 7th ave toward St. Joseph’s Hospital, we hit a large bump which caused Judy to scream loudly. This seemed to get Stella moving finally and her legs slid out a little. And then, to the hip and quickly, with Judy’s last push, Stella’s body and head came easily out. The birth bared little resemblance to that of our son’s but I will never forget either. Babies seem to come out so fast at the very end. Like arriving on a slip-n-slide. We were still a few minutes from the hospital. Stella had little to no signs of life and so Mike started compressions as his partner used a tiny air bag on her. I can’t think of a worse moment in my life. When we arrived at the hospital there was a team (literally) of people waiting for us at the ER door – it was like a TV show. They wrapped Stella in a blanket and rushed her into the ER. They unloaded Judy and we followed right behind. We made a quick stop in the stall next to where a circle of people were working on Stella. We all determined that Judy could make it to the labor and delivery room. It took forever to get there as it is on the opposite side of the large hospital campus. Once there, they barley had enough time to prepare the room before Judy gave birth to Georgia about 15 minutes after Stella had joined us. Georgia was doing fine. She made a short stop at Judy’s bedside, eyes wide open and looking beautiful, before going to the NICU. A short time later we were moved to a recovery room. On the way there we passed Mike Bruno in the hall. I gave him a pat on the shoulder and said thank you. He looked very stressed. My mom arrived and we all waited for news. We were so worried about Stella. If you had to concoct a scenario that would put a newborn child in grave danger, this one would be right up there with the worst of them. The doctor came in and told us that BOTH girls were doing fine. It was wonderful, shocking news. The sense of relief I felt was somehow overpowered by amazement. Amazement at how our story unfolds in ways I never could imagine. Amazement at how strong by beloved wife is. Amazement at how resilient two tiny human beings can be. The entry of new life had never seemed more miraculous.

The girls were about 8 weeks premature. They were to spend 5-7 weeks in the NICU at St. Joe’s. The girls’ names are Stella Hope and Georgia Faith and they were 3lbs .08oz and 2lbs 11oz respectively.

The ibuprofen dilemma was over and soon after, it would become even clearer why Stella decided to kick her way out, hold her breath for 5 minutes and drag her sister with her….

Home

After Judy’s cyro-surgery, we waited patiently for her to recover and experience the pain relief we all expected. Unfortunately, the pain continued. We all speculated about what could be causing the pain. Was there nerve pain/damage from the procedure? Was it pressure from the mass of the tumor, even though most or all of it could be dead? The list went on and on, as did Judy’s pain and discomfort. After a week or so, they did an ultrasound of the area due to her continuing pain. A blood clot was discovered in her right leg. As a precaution, Charlie put a filter in, above both legs, to prevent any clots from moving north and doing harm. Judy was put on blood thinners as well. Shortly after, it was decided that we would move Judy to the rehab center where she could get physical therapy to strengthen her leg.

We had been in the hospital for over a month already.

The next several weeks were spent battling the pain with various medications while attempting to proceed with the physical therapy. Eventually, we decided that her pain control regimen was stable enough to continue at home. Physical therapy would continue at home as well. Once home, we tried to get into a routine that worked for everyone. Home health care assigned us a nurse to come a couple times per week to watch Judy’s progress. They took blood samples as well, to watch for problems. The physical therapist came once or twice, but unfortunately due to doctor appointments and lack of wellness, we were never able to get into a routine. Medicating the pain, we soon realized, was a delicate arrangement. We were always trying to balance comfort and lucidity. Because of this, and other reasons, we were always trying to use only the amount of medicine needed to achieve tolerable pain. The down side of this is that if we were late with a scheduled dose of meds or worse, missed any doses there were immediate consequences. One of these lapses landed us back in the hospital. While there, they discovered that her anemia, which we knew about before leaving the rehab center, had gotten worse. A blood transfusion was ordered. After getting the fresh blood, Judy felt better than she had in some time. We were sent home and continued our previous routine. Part of which was to have regular appointments with our new OBGYN, Monique. We were really inclined to stay with Judy’s previous OB. However, due to all of her other health issues being handled at Good Sam, we decided to stay with the high risk OB team (PPA) there as well.

PPA had been consulting on our case throughout our stay at Good Sam. All meds and procedures were passed by them for approval. During this time we met many of the Dr.’s from their very large group. For the most part, they just came in most days during rounds to …. well… to do not very much frankly. They would ask how Judy was doing and leave…pretty much. When this would happen at 6am, it could be slightly annoying. Monique was one of the Dr.’s we saw during this time. She actually consulted a lot in regards to how much radiation the baby’s could tolerate from the scans they were doing and wanted to do. In hindsight, this was probably the most important contribution PPA made to our treatment course. The few times we met with Monique in the hospital were during very trying and tiring periods. Because of our stress levels and lack of rest, we were not the friendliest two people you might meet. Our relationship with Monique during this time period was no exception. We did not become fast friends. This however, was soon to change.

Overall, the time between leaving the rehab center and giving birth to the twins could be described, generically, as “increasingly painful and difficult” for Judy. The bigger she got, the more pressure was put on the tumor area. Her pain increased. The amount of pain meds increased. Her mobility decreased more and more. This was most evident to us when we would have to make our increasingly frequent visits to the OB.

Our first follow up visit to the PPA was handled by one of the male Dr.’s we had seen in the hospital. He was very nice and it was at this visit that we began the conversation about staying with PPA for the duration of the pregnancy. The thing about this group, though, is that it’s very large. All of the Dr.’s rotate around to the different offices and hospitals they service. Because of this you are not guaranteed to have your regular Dr. see you at office visits or deliver your children. Our situation was slightly different than most of their clients so they offered to make efforts to only have Dr.’s familiar with our case see us. After this initial visit, we succeeded in seeing Monique on all of our subsequent visits. Our fondness for her grew quickly and blossomed into a friendship that I hope lasts a long time.

On our third or fourth trip to the PPA office we were ending our visit with Monique, when Judy suddenly became very hot, short of breath and then got sick. We had been discussing with Monique how difficult it was for us to get down the office. Judy asked – only slightly joking – if they ever made house calls. This struck Monique as very reasonable, even if unheard of, and she would look into it. Before our next scheduled visit, she has successfully attained approval to see Judy at home and volunteered to do so. This was one of the most important of the many amazing gifts we received from our ever expanding family of friends and doctors.

Around this time, Judy’s blood tests had shown that here anemia was getting worse. It was decided that we would come to the hospital for an outpatient blood transfusion. It would take the better part of a day, but at least we didn’t have to be admitted again. Monique was to be on at the hospital that day and she offered to bring her friend Ed by to consult with us. Ed specializes in pain management as well as working in general practice. The four of us chatted for a couple of hours that day and we came up with some other options for pain control. One of the main issues we were facing was Judy’s use of ibuprofen. Past a certain point in pregnancy, a point which we were only days away from, one must discontinue its use to prevent issues with the baby’s development. Unfortunately, the ibuprofen was a key component to Judy’s pain control. Ed had an alternative to offer that day which was a blessing; as we had previously thought there was none and that Judy would have to suffer the remainder of the pregnancy with no anti-inflammatory. After returning home, we made the changes to Judy’s medicinal routine. Within a day or two, both Monique and Ed made a house call to check on Judy’s progress. Unfortunately, Judy hadn’t experienced the effects that Ed predicted she would. Some adjustments were made and in the following days, a brief experiment with lowering the ibuprofen use. This did not work and Judy continued to need the ibuprofen to control the excruciating pain. As the next couple of days clicked passed, we were filled with worry about what to do next. As has been all along this journey, when faced with an impossible choice – the decision is suddenly made clear…or made for us.

And then, along came Stella…

Back to the Story

The following is an email in it's entirety that I sent out after Judy's procedure. I was going to edit it and or comment on it since obviously things have changed. I think that I will not though. I will comment later as I bring everyone fully up to date on our journey.
Peace - Chris

(emailed Aug. 24th, 2008)
Hello friends and family,

Thank you all for your prayers and well wishes.

The Cryo-ablation procedure that Dr. Charlie conceived and performed went very, very well.

Just prior to the procedure, Charile verbalized his intentions. He would get enough of the tumor to allow Judy to proceed with the pregnancy. Maybe 80 - 90%. If he could get more, he would but he didn't want to damage any nerves or vessels 'trying to be a hero'.

As I mentioned before, the hospital was buzzing about this procedure. Prior to beginning, they asked if they could take pictures and video. The procedure will be written up for the medical journals and the pics/video will supplement the write up.

The anesthesiologist offered Judy the option of staying awake. Instead of putting her under, he could do a spinal combined with a sedative Judy bravely took this option and avoided the risk to the twins and the painful after effects of general anesthesia.

The procedure was very popular. There was quite a crowd in the room and out.

Charlie met me in the hall after a 3 1/2 hour procedure. We sat down in the waiting room where he told me the good news. It had gone even better than he'd expected. I knew it would go well. During my wait, I never once felt any worry or concern. However, I did not expect to hear what Charlie said next. 'I think I got all of it'.

The babies did great. They were totally fine throughout the procedure and a quick ultrasound after confirmed their well being.

We'll do a scan in a couple months to check the tumor area. For now, the goal is getting Judy strong. She will need quite a bit of physical therapy. The tumor had consumed most of the psoas muscle and killing the tumor meant killing the muscle. There's a little left but lifting her leg is going to be tough. All the therapy will be small price to pay if she is cancer free.

Hopefully we'll be home sometime next week.

Chris

Stronger

“whatever doesn’t kill you, makes you stronger” is not an adage I’ve ever felt completely comfortable with. I don’t know why really. It sounds good. Right even. It just sounds like the motto of some hickish camero driving bruiser with an inferiority complex and an Asian arm band tattoo…to me. I’ve never been a fan of Slayer or chain-link steering wheels, but you know what they say: “don’t throw the baby out with the bathwater”…so maybe I should give the ‘ol chestnut a chance. Going through difficult (torturous) times does beg the philosophical mind to search for meaning…a silver lining…something! If ‘whatever’ isn’t killing you but it is making you cry, wretch, curse, scream, beg, sob, churn and/or question your existence, does that mean it’s making you stronger? Maybe. It is probably making you more mature…by definition, I think. I remember being immature. And irresponsible and (logically) reckless. In other words…Blissful. Ignorance is bliss – right? Ignorant of real problems, real stress, real pain and loss. But then, also, ignorant of real joy, real love, real intimacy, real…life. One look into your child’s eyes can make you feel powerful love, joy and happiness that is – at least for that moment – lighter than any heavy weight that might be pulling you down. One look from your…okay, you get the idea. Here is what seems to be happening to me. Usually your life is full between the heart-wrenching and heart-warming. Full of moments of much less significance and consequence. For some reason that gooey center has been sucked out of my existence. With no center, the extremes – good and bad have nothing to connect to. They are magnets of opposite charges, unable to touch but still pushed together by the power of the cosmos. So they just spin around each other. And spin. And spin out of control.

Summertime

This summer we found out we were pregnant. Soon after, doctors found a malignant tumor in Judy’s lower back. The following is an account of our story that I wrote on August 20th, 2008.

Judy started feeling pain in her leg and back about 4 weeks before we
found out she was pregnant. The day we took the home pregnancy test was both exciting and concerning. The concern was due to our calculation that her pain (that had been increasing steadily) had started the day after we conceived.
An ultrasound was quickly scheduled to make sure the pain was not a problem with the pregnancy. The ultrasound showed no problems; everything was where it was supposed to be...in fact there were two little somethings in the right place. Twins. It was literally the last thing we ever expected.

Unfortunately, our excitement was suppressed as her pain continued. We spent the next four to five weeks going through several doctors, chiropractors and physical therapists trying to identify/treat her escalating pain. We even went to the ER one Sunday morning. On top of the unbearable pain, she was also suffering from terrible morning (all day) sickness. Everyone who was trying to diagnose the pain was distracted by the pregnancy and sickness.

Finally, after 10 weeks of this we could take no more. Judy hadn't slept in weeks, was in constant agony, could barely walk and was weak and dehydrated from the hyper emesis (morning sickness). I called her OB/GYN and 'demanded' that she be admitted to the hospital right away. It is a real testament to Judy's strength and pain tolerance that it went on this long. She was admitted to PV hospital on the maternity ward primarily for her hyper emesis. Once admitted and on IV fluids and anti nausea meds, we requested that her pain be the primary focus. An MRI was ordered.

The MRI results showed a large mass in her lower back. The initial MD who informed us of this said it looked to him like a hematoma (essentially pooled blood in various stages of coagulation, possibly from some sort of injury). We were sent down to Interventional Radiology where they were to do a biopsy of the mass. Because of the proximity to major blood vessels, the radiologist (a wonderfully kind man who looks very similar, and sounds exactly, like Barak Obama) decided it would be safer to just aspirate some fluid with a needle. They ran pathology tests on the fluid which were inconclusive.

Due to the location of the mass and the pregnancy, they decided to transfer her to Good Samaritan. Good Sam has the high risk pregnancy team (this is where people come from all over the country to deliver their multiples) plus the facilities to handle any complicated cases. We had no idea at the time just how complicated and unique our case would end up being.

Judy was admitted as a surgical patient. The next several days were spent talking to surgeons who were trying to decide what to do next based on the MRI from PV. We were informed of the most likely diagnoses: hematoma, abscess and tumor. Although many other less likely possibilities were also 'on the table'. It was finally decided that they needed a better MRI. Our general surgeons felt pretty sure that it was either a hematoma or an abscess.
The orthopedic oncologist wasn't convinced and he was the one who wanted a new MRI. His presence on our case made us nervous but the other doctors continued to be positive. The new MRI did not rule out a tumor but did continue to suggest hematoma/abscess. We were sent to the interventional radiologist who strongly suggested that it was only a hematoma. He was able to drain quite a bit of fluid out and he said Judy's body should absorb the rest. After 10 days in the hospital we were sent home.

Judy's pain was not gone but it was much better. Unfortunately, her
Hyper emesis persisted and home health care was ordered to put her back on IV fluids and anti-nausea meds. Over the next several days at home her pain returned and continued to escalate. A follow-up ultrasound showed that the mass had filled back up with fluid. After 10 days at home, we were back in the hospital.

That was three weeks ago.

They put another drain in and watched her. Over the next couple of days they continued to test the output. At first they said it was infected but it turned out not to be. On what was probably the last time they would have tested the fluid output, they found a handful of abnormal cells. It was confirmed the next day that they were malignant.

The location of the tumor is in the iliopsoas muscle. This is a very large muscle that connects the spine to the femur and is used to lift and turn the leg (flex the hip). The pathology of the abnormal cells was not conclusive due to the fact that there were so few (only a hundred or so) and they were floating in fluid. Surgery was ordered. The assumption was that it was a sarcoma (muscle tumor). The purpose of the surgery was to remove the tumor. First they would take a tissue biopsy. While the sample was tested to make sure it was a sarcoma, they would prep for removal.

The pathology came back and it was not a sarcoma. Because of this,
They had to assume the cancer came from somewhere else and the surgery was halted.

That was two weeks ago.

It took a long time for the final pathology to come back.
Unfortunately it was not as conclusive as they had hoped. The one thing that is for sure is that it is a carcinoma and not a sarcoma. Their continued assumption is that this must be a secondary tumor but since the pathology couldn't positively identify the exact cell type, they recommended a PET/CT scan to search for a primary. Fortunately, the scan found no other tumor sites.

Judy is very possibly the only person ever to have a carcinoma that
Appears to have originated in the middle if the iliopsoas with no other known tumors and is pregnant…with twins no less. This sentence describes why it has taken us so long to arrive at this place. It is also explains the unusual treatment situation we are in. People of child bearing age don't usually get this kind of cancer.
People who get this kind of cancer never get it in this location. People who get this kind of cancer have obvious primary tumor sites. It is a very bizarre and possibly completely unique situation.

The preferred treatment for this type of carcinoma is radiation with some chemo to make the tumor even more radiosensitive. Chemo alone does not usually work. Because of the pregnancy, we can't use radiation.

Shortly after we were given this information, in walked Dr. Charlie with an unconventional solution to our unconventional problem. Charlie is our interventional radiologist. He is a great guy who we have become very friendly with. He has been the one putting all the drains in and such. He's from AZ like us, he's our age, he has a son about the same age as Leo and he even lives in our neighborhood. He has always been very concerned about the babies and making sure that they never did anything to harm them.

Charlie's proposal is to use Cryotherapy to freeze the tumor from the inside. The procedure would kill most or all of the tumor without exposing the Judy or the babies to any dangerous chemicals or deadly radiation.

Cryosurgery is sometimes used on small liver, kidney or breast tumors when the patient is unable to have surgery. Charlie is one of the few doctors in AZ allowed to perform it and one of the best in the country.

Although it has never been used on the kind of tumor Judy has and
Probably never in this location, our entire medical team is very optimistic. They all agree that Charlie's idea makes total sense for this situation. No one is more optimistic than Charlie himself. He said to us yesterday, 'this is going to kick ass'.

For quite some time Judy's case has been the talk of the hospital. Now the interest is practically frenzied. Charlie presented his idea to 60 doctors before scheduling it. Many of them have requested admittance just to observe.


The idea is to get as much of the tumor and do as little damage as possible. Then after the babies are born, Judy will go forward with the recommended treatment if there is still remaining tumor.

The procedure is scheduled for tomorrow…