I don’t know if I love the movie Hope Floats because of Harry Connick Jr. or if I love Harry Connick Jr. because of the movie. Either way, if I am flipping through the channels and it is on, I stop and watch. Every time. There is a line in the movie about giving hope a chance to float up.
We spent today at Johns Hopkins. Dave was due to start round 3 of the clinical trial. He had labs and a CT scan done before meeting with one of the doctors. She did not have good news for us. The scan showed growth of previously measured tumors, growth of new tumors, tumors in lymph nodes that we didn’t remember hearing about before. The words “innumerable tumors” were used in reference to his lungs. All around a sucker punch to the gut. Completely unexpected. On the drive home we both commented how we expected to hear works like “stable” and “some shrinkage”. What this means is that Dave did not start round 3 of treatment today. Tomorrow they will look over all the measurements, but in all likelihood Dave will no longer be eligible for the trial because it is not working for him. So, we will start looking at other options – another trial, something connected to the genomic testing Dave had done, or perhaps a conventional line of treatment. We will let hope float up to take the place of utter disappointment.
After the letdown of Samantha’s appointment on Friday, with a few clicks of the mouse I found a potentially encouraging opportunity. Right down the road from the cancer center is the Kennedy Krieger Institute which houses the Osteogenesis Imperfecta Clinic. I spent twenty minutes on the phone with an intake specialist today and have already received appointment paperwork for Samantha to complete before her appointment. I am so optimistic that they will have therapies or suggestions that are going to make her current situation more bearable and also help her in the future. They have a multidisciplinary approach that involves an orthopedic surgeon, an endocrinologist, a radiologist and a physical therapist. I am excited to have an expert team take a look at my girl.
Tomorrow we will talk to the doctors at Hopkins as well as Dave’s oncologist here. Together I know that we will come up with a plan that will get us back on the right track.
I spent a decent part of my morning staring at images of Dave’s liver. The radiologist and ultrasound tech were having difficulty determining what might be live tumor and what were areas that had previously been treated either surgically or with the Sirspheres. As the doctor put it, “We can see that it is abnormal tissue. We are just not sure what makes it abnormal.” Eventually they brought in a second ultrasound technician and more equipment. This additional equipment allowed them to import Dave’s latest CT scan onto the screen, so that as they moved the transducer around, the CT images would also shift allowing them a comparison to what they were seeing via ultrasound. I don’t mean to brag but I was able to see Darth Vader, a horseshoe crab and The Grimace in there.
There were a lot of people in the small room. There was someone from “research” who arrived with two styrofoam boxes in which to carry the biopsy samples. She spent much of her time pacing in the hallway. There were three doctors from pathology who were ready to look at the samples under the microscope to determine if they were adequate. There were two radiologists to do the actual biopsy, two ultrasound techs and a nurse. Oh, and me. I was in there. Once a promising area was located via ultrasound, they were ready to go. Dave was given preemptive Oxycodone as the procedure promised to be pretty uncomfortable. They also numbed his skin via injection. As the big needles were coming out, I got nervous and excused myself out into the hallway. I couldn’t believe that no one asked me to leave. I kept waiting for my exit cue, but it never came.
I sat in the waiting room and sent a few texts and responded to email. A very short while later, I saw the doctor? from research walk by with her styrofoam boxes. I figured they must be done and was amazed at how quickly they were able to finish up. Minutes later I found out why. Apparently they tried to approach the tumor location from one angle closer to Dave’s belly button but they weren’t able to get to the spot. So they tried again from his side – between two ribs. This caused Dave to yell out in pain. At that point, they determined that they would not be able to do the biopsy. The radiologist explained to Dave that because it was for a clinical trial they were not going to put him through all of that pain to get the tumor sample. If it were a procedure he needed, they would have pressed on.
Our understanding of the clinical trial was that in order to be eligible a biopsy had to be attempted. If it was not successful that would be okay. We weren’t entirely sure if what was done today would count. On the drive home, Dave got an email from Dr. A reassuring him that they would still be able to move forward with the trial. So our little story had a happy ending.
Dave had his scan today. This is the email response from his doctor —
We ignore the increase in size in the liver lesions as this is post treatment effect and inflammation.
The lung nodules are slightly bigger but not much-as expected.
The liver multiple lesions all appear to have increased in size. These are
all diffusely low in density. 2 of the target lesions have clearly
increased as noted above. Additional lesions also appear larger. The
subcapsular lesion previously measuring 5.0 x 2.5 cm now measures 5.2 x
3.4 cm. Adjacent to this a lesion previously measuring 21 x 19 mm now
measures 31 x 27 mm. The spleen pancreas kidneys and adrenal glands are
not remarkable. The gallbladder is not remarkable No mesenteric or
retroperitoneal mass or lymphadenopathy is seen.
lungs demonstrate increase in size of several of the previously noted
metastasis. Anteriorly in the right mid chest the previously noted 7 x 6
mm nodule now measures 12 x 10 mm. In the lingula the previously noted 11
x 9 mm nodule now measures 16 x 16 mm.. A third nodule seen posteriorly in
the right mid to lower chest previously measuring 11 x 9 mm now measures
15 x 12 mm..
No ileus or obstruction is noted. Review of the bone windows demonstrates
no evidence of sclerotic or lytic bony metastasis..
1. The 3 previously noted pulmonary nodules are each increased in size on
2. Multiple liver lesions are also increased in size on todays study.
Did you notice “2 of the target lesions have clearly increased as noted above” but there was nothing above? Dave talked to his doctor and he said that he believes the increase is due to the SirSpheres treatment but it could be that the tumors have indeed grown. I guess we will know more when he has his MRI or PET scan in the next few weeks.
Dave also had an EKG today. He has been noticing some irregular heartbeats. We are waiting to hear what that test showed, if anything.
We will let you know when we know.
Monday – Brunch with friends. The perfect way to start any week, I think.
Tuesday – First day of school! Parker is excited to have fun new school supplies and the same teacher as last year. Grant goes back reluctantly – he is unimpressed with new binders and pencils, but he has done his reflection on the cancer book and completed the math review packet. Dave has worked all summer but it’s different, of course, when the students are there. I went back to work last week and am excited to see the building teeming with kids. I have the best teaching job on the planet. Once again I would like to say how much I love what I do. Also, part time? Perfect.
Wednesday – The day reality sets in and we realize that we have to do it all over again for 190 days or so.
Thursday – Scan day for Dave. This scan feels huge to me. Almost as huge as the very first one. Dave has been off of systemic chemo since early June so it will let us know what, if anything, has been going on. We know his liver tumors have been under attack from the Sirspheres, but this will let us know if the lung tumors have remained stable. The usual requests apply here for positive thoughts, good vibes, prayers. Dave will have a PET scan or MRI in the next few weeks to determine how effective the Sirspheres procedure was. Also, Sammi comes home!
Friday – Sam has an appointment with the orthopedist to check on her arm and hopefully have the cast removed. She will be very happy to be known as just “Sam” on campus instead of “Sam, the girl with the purple cast”. I am hoping she will stick around for the weekend, but I don’t want to put any pressure on her. If she wants to head back to campus, then that’s a good thing too.
I tend to think of songs that relate to events or words. Today we got an email from Dave’s doctor that told us a little, but overall I felt like we didn’t know very much. So naturally this is the first thing that popped into my head…
Anyway, on to the real news. The brief email Dave got said that his lung tumors were stable (good news) but that the liver tumors had shown growth (not such good news). In the whole scheme of things, I think we are feeling relieved. I was happy to hear that there were no tumors in any new locations. It will be helpful to read the actual scan report and see all the details. We will go in on Thursday to discuss treatment options. Dave is dreading some of the available chemo drugs and their side effects, but he is also in the slim margin of people who don’t lose their hair on his current regimen. So, hopefully he will again be able to defy the odds and escape some of the ickier side effects of any future drugs.
On a different medical note, Sammi’s wrist is still given her trouble so she goes in for an MRI tomorrow. The scheduler at the radiology place was an angel. The only available appointment was Friday a few hours before graduation but I took it because I didn’t really have a choice. She called me back later and had saved me a better appointment time for tomorrow at a different location. She could have hung up and not given us another thought but she didn’t. Small kindnesses.
Most mornings I wake up at 5AM give or take a few minutes. The cause might be a dog whining to go out, or Dave shuffling around. There is a critical moment (I know you know what I am talking about) when I can either shut off my brain or a tiny worry plants itself and won’t let go. Lots of mornings I hush up my brain and send stressful thoughts packing. But on lots of mornings, that first thought about Dave’s health or Sammi heading off to school or money or stuff that needs to get done starts the snowball effect of other worries. It is THE WORST. Tomorrow we head to South Carolina where I sleep soundly and can keep stress at bay. Which is perfect timing because Dave has a scan on Tuesday. And depending on what that scan reveals, he would really like to take a break from chemo for a bit. While I understand that he wants and definitely needs a break, this induces panic in me on so many levels. I’ll check back in with you all on Tuesday. In the meantime, if you are up in the wee hours, I’ll be up. We can play Words with Friends. : )
I think we live and breathe by the scans. We hold our breath anticipating each one. We let out a big sigh of relief when it is “not bad” news, or we let out half an exhalation when it is “okay” news. Truthfully, I am not sure there has been one scan when I have rejoiced over the results. There have been many times when I wish I could share others optimism that the scan wasn’t too bad or was pretty good news. I guess realistically I want it all. I want the scan result to say the cancer has been stopped dead in its tracks. Or a tumor that was there last month has disappeared completely.
You would think reviewing scan results would be fairly straightforward. The doctor gives us the Spark Notes version of the report. At the end of the appointment, we get a copy to take home. It is at this point that the confusion sets in. I sat down and looked at Dave’s last five scans. Dave had expressed concern to me about tumors being referenced in his latest scan that he didn’t remember. It seems that not all reports are created equal. Some give no measurements but are more like summaries. Some give lots of measurements and usually say “which previously measured” or “as previously noted”. So it becomes unclear which tumors are where and what has increased and by how much. It is more uncertainty in a land of confusion. I feel like I need to draw a picture and mark all the information we have on it. Maybe I will.