Update on Shane

So I thought we would start updating the blog again so that people would know how Shane is doing.  I will give the readers digest version of what has been going on with Shane over the past couple of months.

He had been in a lot of pain due to some tumors on his pelvis.  So he has been battling with issues from taking pain meds.  He had started a trial chemo in September and did 2 rounds of that.  He had a scan done following the 2^nd round and the tumors in his pelvis had increased in size to 11 cm each.  At that time, there was some growth in the tumors in his lungs but the doctor didn’t feel like they were concerning.  So with the growth, he was no longer on the trial.  We knew prior to this chemo that they do not have any more treatments that they know work for angiosarcoma.  So knowing this after this trial didn’t work, we asked…What next?  Dr. Gouw said that there was a chemo and another drug that they could try that might help, but that he is scraping the bottom of the barrel to find things.  We decided that radiation would be good to do to help with his pain in his pelvis, but that because they had already radiated the area, it couldn’t be as intense and might not be as beneficial.  So Shane had that done a few weeks ago and it has really helped with the pain in his pelvis. 

During these last few months, he had some bowel issues and was throwing up.  It had gotten to the point that he wasn’t eating much and if he did, then he threw it up.  We ended up going to the ER a couple of weeks ago thinking he had a bowel obstruction.  After many tests, they told us that his blood counts were low and he needed a blood transfusion and that he had fluid built about around one of his lungs.  The next morning we had to go to Huntsman for radiation so I went and talked to Dr. Gouw’s nurse Katie and told her what was going on and she said that he needed to be admitted to get blood and have the fluid drained from around his lung.  That helped relieve the pressure in his chest and he looked a lot better with having gotten the blood.

Shane and I had planned on taking the boys on a cruise over Thanksgiving week.  After everything that was going on, I was thinking that we wouldn’t be going.  After a lot of thought and talking to Shane, we decided that I would still go and take the boys.  The past year has been kind of crazy and I needed a break from reality for a bit.  Shane had started feeling better, so I thought it would be ok.  I knew his Mom would do whatever she could to help him.  So the boys and I went.  It was hard to relax as I would sit and wonder how Shane was doing.  I had communication here and there with Shane while we were gone.  One the last night of the cruise, I had a text to call Shane.  I knew something wasn’t right.  So come to find out, he had been in and out of the ER a couple of times during the week because of the fluid and his oxygen levels – in the 60’s.  So they were able to get oxygen delivered to the house.  But then things got worse on Saturday and he was admitted to Huntsman.  They put in a chest tube to start draining all the fluid around the lung.  The fluid keeps coming because of the tumors in his lung.  I got home the next day and drove straight to Huntsman.  I really hated to see him like this.  But I was told that he was doing a lot better than from the day before.  After having the radiation on his pelvis which helped with the pain, he then realized he was having a lot of pain also in his back.  So he continues to deal with that.

On Monday, they did a procedure where they went in and put a smaller drain tube in his chest that he would be able to come home with and drain as needed there.  As well as went in and sprayed talc in areas that the lung hasn’t re-attached itself to the chest wall. (His lung had collapsed in all the craziness of the days prior).  The talc is supposed to help the lung re-attach thus helping reduce/eliminate the fluid build up.  We were told he could go home on Tuesday.

Tuesday came and went…still there.  There was still a lot of drainage and they wanted to get him off IV meds before sending him home.

Wednesday came and I got up there around noon and everything seemed ok.  He had done a scan in the morning. After a little while, Shane told me that we need to talk.  The doctors had come in this morning and talked to him about what was going on.  They told him that the cancer in his lungs has spread quite a bit since his last scan.  They told him that there was no treatment left to do.  As not only had our insurance denied the chemo/drugs they wanted to try (it is not FDA approved for angiosarcoma) but that one of them could actually make things worse with what is going on his lungs.  After talking to them and then Dr. Gouw came in and talked to us and went over things.  He told us that depending on how he does with the fluid, he might have a few weeks to a couple of months-ish  left.

It took a lot of digesting because Shane and I had just met with Dr. Gouw a few weeks ago and he told us that he really didn’t have any life-threatening tumors.  Things happened so fast and the cancer is spreading so quickly.

We talked to Dr. Gouw and then Dr. Poppe (radiation doc) about doing radiation on the area in his back that is causing him the pain and they are working with the insurance company to do that.

They talked to us about hospice a little bit.  Shane and I discussed it and we want to do the radiation first and see where we are at then.  Once we start hospice, he can’t do any other treatments like radiation or any blood transfusions (which he seems to need here and there), so we want to make sure we do all we can before choosing that option.

So needless to say, the last few days have been emotionally crazy.  We have gotten his pain manageable for now and he is hooked up getting more blood right now to boost his counts before we go home and we should be able to leave in a few hours.  I will not be posting this until Sunday as we have not had a chance to talk to our boys about the seriousness of this and will be doing so on Sunday night.

Because Shane doesn’t have a lot of energy or is in some pain or is sleeping a lot…it is best not to have visitors just stop by.  He has requested no visitors for the past few days at Huntsman and may continue to do so.  So if you want to see him, please just email me and I will have to run it by him but I am guessing that he is still not up for them.  It takes a lot out of him.

Please just continue to check here to see how he is doing and I will try and keep it updated.  I don’t want to spend my days on the phone saying the same thing over and over to a lot of different people and email is my best way of communication…and I can get to it when convenient for me.  If you want to send an email to Shane, you can email him (he may check it during the week…as YES he is still trying to work.  Does this surprise anyone?  Not me J) or send it to me ( jenlsager@msn.com ) and I can get it to him.