Thursday: A Completely Different Story

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When I got the phone call that Sam’s surgery could be done August 1st there was really no discussion.  Dave and I both just assumed that 1) she would have it done and 2) I would go with her.  Honestly, I was actually much more concerned about her surgery and recovery than I was Dave’s.  After all, his mapping had gone so smoothly and although I knew this wasn’t the same, I wasn’t worried.  And luckily Dave’s sister was more than happy to accompany him for his procedure.

Kris picked Dave up in plenty of time for his 10:30 check in at the hospital.  It sounds like it was the standard – check in, sit and wait, get taken back, sit and wait, prep, sit and wait.  Dave’s procedure didn’t start until 1:00 so I’m still not sure why he had to be there SO far ahead of time.  Dave’s doctor talked to Kris afterwards and let her know that they were able to see the radioactive areas so the Sirsperes appeared to have traveled exactly where they were supposed to.  Unfortunately the star closure device that had worked so well to close off Dave’s femoral artery the first time around didn’t take this time, so they had to apply a lot of pressure which meant that he was likely to be sore.  The plan was to keep an eye on him for 3-4 hours and then he could head home.

When Kris went back to see him, she said he mostly slept and when he was awake he was extremely uncomfortable.  In fact, even in his sleep he was wincing.  At 6:30, the nurse took him for a walk around the floor.  When Dave was asked his pain level, he told them he was at a 5 on the pain scale and that was WITH pain medicine.  I am amazed that the nurses thought that was an acceptable level of pain.  I think they are much more experienced in dealing with cardiac cath patients rather than interventional radiology patients.  (When Dave and I went in for his mapping, we got glazed looks from the person who checked him in and the nurse who was in charge of getting his vitals and starting his IV when they asked him what he was there for that day.)

Kris called me because she was concerned that he was going to be discharged before he was able to get another round of pain meds.  She was also looking at the time and realizing it would be a tight squeeze for them to get home and for me to run out and get his prescriptions filled before he was due to take them.  So I called my brother and had him stop by the hospital and get the prescriptions and bring them to me.  In the meantime, I called the pharmacy to make sure they had everything in stock.  They had 32 percocet and Dave needed 30 so we were good!  I was a little paranoid about being put on some sort of watch list after filling 3 narcotics prescriptions for 2 different people in one afternoon.

When I got back from Safeway, Dave and Kris were back.  Kris was putting in a call to the doctor about Dave’s pain level.  He was very uncomfortable on the drive home and the Dilaudid seemed to be having no effect.  Dave was upstairs and I think the best description of his actions was like those of a woman in late labor.  He would lay down for a minute and then sit up.  He was leaning against furniture and then sitting down.  There was no position in which he was comfortable.  Kris and I muscled a leather and wooden reclining chair upstairs thinking that might help.  But it didn’t.  He was rating his pain level at a 7 or 8.  In the meantime, the doctor on call called back.  Dave had been prescribed the same size Dilaudid tablets as Sam but only half the dosage.  So I asked if Dave could alternate Dilaudid and Percocet every two hours instead of taking one Dilaudid every four hours.  The doctor said the Dilaudid is actually stronger so to take one pill every two hours and if that didn’t work that Dave would need to go back to the hospital for IV meds.

Kris and I decided that we would give him his next dose, when it was time, and if it didn’t help then he would have to go back to the hospital.  Then we heard Dave upstairs throwing up.  There was discussion about calling an ambulance but I pushed for the car thinking that Dave would be miserable on a gurney and an ambulance arriving would scare the crap out of the kids.  So Kris loaded Dave back up into her car and took him back to the hospital.  I called the doctor, and he said they should go straight to the ER.  When they got there, the doctor had not called, so the ER didn’t know what to do with Dave.  Fortunately for him, Kris took complete charge of the situation and got him what he needed.  He was admitted into the hospital and got to his room in the wee hours of the morning.  Although it sounds like it took much longer than was bearable, Dave felt relief once he was able to get pain medication through his port.

When we consulted about this procedure the side effects that were most mentioned were nausea and fatigue or as they call them “flu like symptoms”.  The importance of being hydrated was stressed.  Pain was not something that was highlighted as something of which to be aware although Kris said they did talk about it yesterday before he went back.  I am glad that Dave decided to treat the whole liver at once.  Because if he had anywhere near this reaction to treating half of his liver, it would have been a hard sell to get him to do a second round.

As of now, there are no orders to send him home tonight.  We have been assured that they will give him oral meds and make sure they are effective before they release him.  In the meantime, he is actually getting some sleep and eating and drinking which is very positive news.

xoxo

Robyn

A Lot Can Happen in a Year

One_year_anniversaryI launched this blog about a year ago hoping to share our news in an efficient and hopefully interesting way.  Last July = 15 blogs posts.  This July = 1.  Life has been a little busy lately.

Samantha and I survived “Setting Sail” at CNU.  The parents learned a ton, mingled and sought out glimpses of their children.  The kids socialized, played games, ate in the dining halls and slept in the dorms.  Samantha stayed on three more days for summer leadership.  Surprisingly, she texted me daily and even called a few times.  It was definitely a period of adjustment as she looked for kindred spirits and joined in “bonding activities” that weren’t necessarily her cup of tea.  Luckily I was armed with all the right phrases to encourage and support her, and by the end of the week, she was very tired but happy to have found the right school and made new friends.  I think August will be a much easier transition for HER.  (I’ll be crying like a baby……)

Dave is scheduled to have his “mapping” procedure done next Tuesday, July 16th.  Assuming that all goes as planned his first dose of SirSpheres will be August 1st.  We had hoped he could do both sides of the liver at once and take advantage of the summer lull to recover.  Unfortunately the interventional radiologist says this isn’t a good option for Dave which is a change-up from when we met with him a few weeks ago.  So the second procedure is currently scheduled for August 27th, but we are trying to get it changed to a week earlier if possible.  Dave has travel plans over the Labor Day weekend and the school year is just starting to get going at that time.  That timing would be tough since Dave can expect “5-7 days of flu-like symptoms”.

We got a sad email today.  One of the people we attended the retreat (https://embracingtherollercoaster.wordpress.com/category/couples-retreat) with last October passed away yesterday.  J was the only female patient and had been struggling with poor scans and treatments that weren’t working.  She leaves behind a kind, loving husband and a smart, energetic preteen daughter.  My heart is feeling very heavy.

We are back in the swing of things here at home.   Lots of swimming, guests coming into town, lunch/dinner dates, oboe lessons, tennis camps.  And a consult with an orthopedic surgeon.  Did I mention that Sam has been told she needs surgery?  This upcoming year is shaping up to be a busy one too.  Stay tuned.

xoxo

Robyn

Conflicting Information

We met with an interventional radiologist who is affiliated with Fairfax Hospital.  He works with a radiation oncologist and can perform the Y90 or Sirispheres procedure.  As thorough as we thought the doctor from Reston was, we learned even more information yesterday.  Some of it was contrary to what we had been told on Monday.  This doctor says that chemoembolization is not an appropriate treatment option as its success has been in primary liver cancers not metastatic colon cancer.  He also says that Dave cannot be on Vectibix concurrent with the radiation treatment.  In addition, the “keeping your distance” after treatment is unnecessary.  One of the bigger pieces of information we gained was that both sides of Dave’s liver would have to be treated.  The Reston doctor said that Dave’s lesions were contained to the bigger right side.  Yesterday we learned that there a tumor on the left side which is very close but much deeper to the site where the resection surgery was done.  So, Dave will meet with the radiation oncologist Monday morning, and we will start scheduling the procedures from there.  Once again, when we think there might be a decision to be made, there really is only one path and we know we should be taking it.

I just dropped Dave off at the airport.  He is flying to Chicago to meet up with his dad, uncle and brother for a Tremaine men’s weekend.  They will be cheering on the Blackhawks at game 5 Saturday night.  Very thankful that Dave has this opportunity and that the men in his family have made this weekend happen for him.

xoxo

Robyn

Hugs

When we were in our late teens or early twenties, my friend, Alex, commented that people feel a need to hug me.  Maybe it was after I told her about a professor who randomly gave me a hug, or it could have been when we were new teachers and people would great me with a hug and her with a warm smile and a handshake.  We decided that I gave off some sort of “hug me” vibe and she did not.  It is something that I have been aware of since then.

Today we met with a radiologist to discuss options for treating Dave’s liver lesions.  We have two options.  Y90 or chemoembolization.  The doctor was very thorough with his descriptions of both and even drew us pictures so that we could better understand.  The procedures are similar in many ways but the major difference is what the microspheres are carrying.  In Y90, they are carrying radiation which zaps the tumors.  Whereas with chemoembolization, the spheres carry chemotherapy drugs (in this case Irinotecan) directly to the tumors.  There are different schools of thought on which method is more effective.  We are waiting to hear back from Dave’s oncologist, but we are definitely leaning towards Y90.  It involves two procedures.  The first day, the radiologist goes in and maps the path to the tumors blocking off any arteries where the radioactive spheres shouldn’t go.  Afterwards, they inject a fluid which will travel along the desired path to make sure that no more than 20% of the radioactive spheres could make their way to Dave’s lungs. Apparently Dave’s liver is ideal for this kind of procedure even though he had the resection surgery previously.   The second time Dave goes in, they would inject the microspheres.  For a week afterwards, they recommend that he stay 3-6 feet away from people as a precaution. Follow up scans would be done to see how the tumors are responding.  Unfortunately the hospital closest to us is still going through the process of being licensed to perform Y90.  The doctor we met with has years of experience at another hospital but Reston Hospital won’t have it until August or September.  We would like to start sooner than later, and it can be done at Fairfax, Georgetown, George Washington Hospital, Hopkins, U of Md. and likely others.  We are so fortunate to live in an area with so many excellent health care options.  

We thanked the doctor, shook hands, and headed out the door.  He walked us down the hall a bit and shook hands with Dave again.  Then he put his arm around my shoulders and gave me a side hug and wished me well.  As I walked away I couldn’t help but wonder what vibe I had given off that made the doctor, who we just met, give me a little hug.  Did I seem like I needed reassurance or sympathy?  I really hope not.

xoxo

Robyn

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“Relax.”

ImagePerhaps the most annoying two syllables in the english language?  You are telling me to relax?  Do you know what is going on in my life right now?  No?  Okay, then hush.

After Dave’s appointment this morning, I attempted to drop off Sammi’s MRI CD at the orthopedist’s office.  They wouldn’t take it.  They wouldn’t talk to me because now Sammi is 18.  Frustrating but I tried to be understanding.  I asked if I could just leave it and perhaps the doctor could take a look and let us know if there was anything we needed to do before my child heads off for three weeks.  Nope.  Eventually after some sighs of annoyance and a few glares, the receptionist went back asked the doctor if there was anything they could do.  Because they “know me”, they gave me a wink and a nod and said “we saw something on the scan but Samantha should be fine to head off on vacation as long as she wears the splint.”  As I was leaving, the receptionist told me to “relax”.  I kept walking.  Had I turned around, I might have thrown something at her.

Dave’s appointment went fine.  We now have a new plan of action.  I feel like it is aggressive which I like.  He is going to start on a third line treatment called Vectibix.  It is infused for an hour every other week.  Many of the side effects should be more manageable than those he is currently experiencing.  There is a dreaded side effect that involves a skin rash, but I am hopeful this will be minimal.  In addition to the Vectibix, Dave will also go in on Monday to meet with a radiation oncologist to discuss Y90.  Y90 is a procedure in which they inject microspheres that find their way to the liver to radiate the tumors.  (Okay, obviously I didn’t go to medical school but this is my basic understanding of the procedure!)  For me, it is a relief that we have two ways to attack the cancer right now.

Tomorrow is graduation.  And then All Night Grad Party.  I will be there from midnight to 5AM, if you are looking for me.

xoxo

Robyn