To Share or Not to Share

I think that it is important to protect Dave from undue stress.  Mostly this means that I am dealing with house stuff or car stuff or kid stuff.  Sometimes, there is information that I find out and the first person I want to talk to about it is Dave.  But, I can’t because it might be upsetting, and he has enough to deal with.  So, I talk to friends or family and work through it that way.  

There are times when it is a tough call if and what I should share.  Last week I got an email from one of the couples we met on the retreat.  It had phrases like “rapid tumor growth” and “recommend hospice”.  I have sat on this information for a week now not knowing what to share if anything.  We are going to have dinner with this couple tomorrow night so I felt like I had to say something.  After all, it would look uncaring if we didn’t support them during this time.  However, I also have to protect Dave’s mental state at the same time.  In the end, I decided to tell him that D. is going to try six rounds of chemo since he has had tumor growth recently.  That way he has some idea what is going on but isn’t completely burdened by all that is going on.  Hopefully that is the right call.

xoxo

Robyn

Unanswered Questions

Dave had his scan today.  This is the email response from his doctor —

David,

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..

IMPRESSION:
1.  The 3 previously noted pulmonary nodules are each increased in size on
todays examination.
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.

xoxo

Robyn

I Don’t Know Much….

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…

http://www.youtube.com/watch?v=i43fSjbEmA8

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.

xoxo

Robyn

All’s Quiet in the Western Suburbs

Dave had a scan on Monday.  Unfortunately his oncologist is out of town.  But because Dr. Spira is a caring doctor, he got a look at the scan report and emailed Dave.  In a nutshell he said, “The progression of cancer growth is minimal although clear.”  Disappointing but not altogether surprising since Dave was off of chemo for almost six weeks.  The plan is to add Avastin back to the mix this week and hope that stops the tumor growth.  

xoxo

Robyn

Inspiration and Eggs Benedict

ImageRemember the five other couples we met at the Johns Hopkins retreat?  (https://embracingtherollercoaster.wordpress.com/2012/10/08/the-couples)  We met up with two of the couples today for brunch.  I was equal parts looking forward to it and dreading it.  I find that I don’t really like to expose myself to anything that might permeate the bubble in which I choose to live.  We sat and chatted and brunched and caught up.  Two hours flew by in the blink of an eye.

D, the oldest member of our group, had noticeably lost weight.  He was in the hospital in December for pleurisy.  Turns out for the last three years, he has had cancer related challenges around his birthday.  This year was no different.  He has a tumor on his back which has started to grow and so he is now back on a chemo regimen that he swore he would never do again because the side effects are so awful.

J, the only female patient in our group, looked great.  I thought she looked even more lovely than when we met her in October.  She revealed that her last two scans were not good.  She has been through lots of different chemo regimens many of which stopped working.  She said she is hopeful that this one will make a difference for her.  When she hugged me goodbye she got very teary eyed and emotional.  It made me worry about how “not good” her scans are.

Once again, I was humbled and reminded that while we may find our path challenging and tiring, there are others out there who are forging ahead through so much more.  They are doing so with grace and humor and tenacity.

xoxo

Robyn

Okay.

Dr. Spira started the conversation with “Dave your scan looks okay.”  I would have preferred “fantastic” or “miraculous”, but I guess I’ll make do with “okay”.  Basically, the three lung lesions have increased in size very slightly – we’re talking millimeters of change.  Four of the tumors they have been keeping track of in his liver have also increased a bit.  One went from 1.0 cm to 1.4cm so nothing earth shattering but not in the direction we want things heading.  Dr. Spira said that he is not “overly” worried but this just means that we should continue to keep a close eye on things.  He said it doesn’t mean “that the chemo has stopped working”.  His recommendation was that Dave continue with his current treatment plan.  

The low thyroid is likely caused by the chemotherapy so they will continue to monitor it when he has his labs done at the office every two weeks.  The high liver function blood work didn’t alarm him at all.  Apparently this is something they also monitor when Dave has his labs done.  The slight increase in his CEA level could also be due to a variety of factors. 

The good thing about going with Dave to his doctor’s appointment is that he confesses things that he might not otherwise mention.  He has been having pain in his right side and was concerned it might be cancer related.  He hadn’t mentioned this to me prior to the appointment.  Dr. Spira reassured him that there was nothing on the scan that would cause that pain and that it is more than likely a muscle strain.

I mentioned previously that Dave was having some issues with his nether regions.  Turns out he has some kind of internal abscess which will have to be surgically removed after Christmas.  So, that means he is taking a chemo break at least for a little while.  Dave is looking forward to some time off from chemo.  I am concerned at the timing, but as with this entire journey so far, there isn’t a decision to be made.  He has to have the abscess removed because it is infected.  There is one path so that is the one we are one.  

xoxo

Robyn