sadwife

Well, we were torn between chemo or not.
Norbert started chemo, gemzar/carboplatin on June 10, 2014. It was supposed to be two weeks on, one week off. After one round, we were looking forward to one one week off. That was the week of June 24th. The weekends after treatment were very hard on him so we resigned to the fact that the weekends would be days that we would have to take it easy and not do much.
Norbert has been taking hemp oil (Rick Simpson oil) since he’s been diagnosed. When he first started taking it, it made him very loopy(slurred speech, unbalanced, very tired) sometimes lasting well into the next day. After a couple of months taking it every night, his body adjusted and he no longer had those affects. On June 25th, he started taking a hemp oil that we got from a different source. It was different in color but supposedly was more pure and was pharmaceutical grade. That’s what we were told. It was supposed to be better than the stuff that he had taken before. I gave him the same dose of the new stuff as I had of the old stuff. That same night we received a phone call that his platelets were very low. He had an appt. with the oncologist on June 27th, so we didn’t worry about it.
The next morning I did my usual, went to yoga then to work. At work, I received a text from one of our sons that I misread and didn’t worry about. Later that day, he called me and told me that Norbert had fallen and just laid there. He heard him fall from another room, so he ran to him and helped him to the bed where he fell asleep. He said he was acting just like he did when he first started taking hemp oil. I figured that the hemp oil must have been much more potent than what he was taking and that he would have to sleep it off. Again, I knew he had an appt with the Dr the next day so I didn’t worry. It was our youngest sons 18th birthday and we had many family members (who didn’t know about the cancer) coming over to celebrate. As family came over, our sons and I alternated between Norbert and the guests. I made the excuse that he didn’t feel well.
The next morning, it took unusually long for Norbert to get ready for his noon appt. I chalked it off to the hemp oil and thought possibly the low platelet level. When we got to the Dr’s office he decided to give him a platelet transfusion and put off chemo another week. We were at the hospital until early evening. When we got home, some neighbors (who knew about the cancer) cooked for us. Norbert was still hardly speaking and when he did, he struggled to get the words out and was still extremely slurred. I made a call to find out what I needed to feed him to get the hemp oil through his system because I still thought it was the hemp. I was told there no way the hemp oil was in his system 48 hours later. I then thought it had to be the low platelet level and figured the transfusion would make it better. Than the neighbors that were over mentioned that he looked like he may have had a stroke. That never occurred to me, but for the rest of the night it was in the back of my mind.
The next morning I got him ready, which again took hours, and I took him to the hospital his cardiologist was out of (which is a different hospital than his oncologist is out of). There, they looked at him and immediately admitted him. He had had a stroke to the right side of the brain that left his left side weakened. He was there from Saturday, June 28 to Tuesday, July 1st. While there, we decided to move oncology from the other hospital to this hospital to keep all of his doctors under the same roof. It dawned on me that the oncologist was only concerned about the cancer and I needed to have all his Dr’s under the same roof for his best care overall. It was disturbing that he had spent 6 hours at the other hospital the day after the stroke and nobody there saw it.
After being released, he became very depressed. I have never seen my husband like that and it was breaking my heart. I was trying to do everything I could to distract him. We made plans to go to the lake house for the 4th of July weekend. He was at least looking forward to something. We started out on Thursday, July 3, headed north. We stopped at a store while my sister-in-law, who we were following, ran in to pick up a few things. I had been holding his hand since we left the house. While waiting for her, Norbert asked me to squeeze his hand. I told him I had been squeezing it. He said he couldn’t feel his left arm. I asked him for how long. He said for about an hour. I immediately took him back to the hospital where they once again immediately readmitted him. We’re still here and don’t know when they will allow him to go home. They’re considering inpatient rehab. The oncologist that we will be seeing out of this hospital was a little too forward than I was prepared for. We will have to put chemo off until he regains strength. If he doesn’t regain strength, than he may not be able to continue with chemo and we may have to look at the few options still available to him. It certainly wasn’t what I wanted to hear, but by the same token I appreciated his frankness and telling me that he wouldn’t recommend chemo if it was only going to make the remaining time miserable for him. I’m only hoping that he will make a nice recovery from the stroke so we can address the cancer.
We had been hiding Norbert’s cancer from most except for a few close family and friends but now we were not going to be able to hide this. We ended up telling most people about the stroke. This worked to end some of the rumors that have been floating around for quite a while.
I haven’t told anyone about the conversation with the oncologist yet. I’m hoping for a quick recovery from the stroke so I won’t have to have that conversation with anyone.
I’ve learned to take one day at a time and just hope for the best. We’ll see what tomorrow brings.

Thanks everyone for all the encouraging words. Norbert is still torn between whether to do the chemo or not, so he decided to put it off for another week to think about it more. We were extremely disappointed with the responses to our questions from the oncologist. All we asked for was averages, but got absolutely nothing. He’s hoping for more input from people on this site since you folks are in the same boat facing the same cancer he is. The chemo they want him to have is gemcitibine and carboplatin(paraplatin). Two weeks on, one week off, for three rounds, than scan to determine if it’s working. Norbert did ask me to ask those of you that responded what stage each of you is in. I tried to look up the history of some of you and it was comforting when I told him that some of your cases were very similar to his. His biggest fear of chemo is getting sick when he feels very good right now. And if he does start it, but then decides he wants to stop, what’s the chances that he’ll get back to feeling as good as he currently feels?
Julie,
I found a thread where you wrote something about your H pylori theory……I was wondering what that theory was because while Norbert was going through all of the testing to figure out what was wrong with him, they found H pylori and ulcers.
That thread had something to do with a database being put together, which I was also confused about, but would like more info on.
Again, thanks to everyone.
Olga

So Norbert is in having the radiation embolization right now. Yesterday, I read him a few posts that made him feel better about his decision about doing the chemo. I still have a hard time reading some of the posts without falling apart. I only read him the posts that give him hope or make him feel better about his decision.
I’m trying to understand the CA 19-9, so before he went back I had a nurse show me that in his chart. It just said it was <18 and normal range was 0-35 so his is in normal range. Does this sound right? Or should I be asking a different question? I also got his alk-phos level as 221 in March and 257 in April. Is that good? I know that level is above normal but nearly what I've seen within some of these posts. I now have access to his hospital chart online, which has a wealth of info, but it makes for a lot of questions. I've always hated science, but now, I wish I would have paid better attention in school. HELP!!