A Wookies return.....

Today I had a visit with the doc, I was originally wondering how I would get there but @Mitch flew in to save the day. I did enjoy introducing him to my nurses so they could meet who I talk about.

Doc came into the exam room with a somewhat somber expression which scared me. He said the Lonsurf isn’t cutting it so he decided to go back to the chemo that started it all….Folfox. So tomorrow I go back to a 3 day a week schedule of Folfox and no more Lonsurf, not gonna say that I will miss it. So only time will tell how this all works out. As always, thank you all for all the love and support.
 
So it’s been a while

You all have read about how much I love my nurses and how they care for me like family. Well today they did it again, I had a reaction to a drug within my mix. I suddenly had warm hands, which I hadn’t had in a while, and they itches and were red. Suddenly Anna says “why is your face so red?”. As she says this Rikki and Alex run over to me and by that time I was having trouble swallowing and felt off. They all jumped into action with Benadryl and a steroid. Then my doc walks in and says the one drug does this to many and not to be worried about it. As I’m typing this I am feeling way better, but I’m grateful for those that care for me.
 
Frank said:
So it’s been a while

You all have read about how much I love my nurses and how they care for me like family. Well today they did it again, I had a reaction to a drug within my mix. I suddenly had warm hands, which I hadn’t had in a while, and they itches and were red. Suddenly Anna says “why is your face so red?”. As she says this Rikki and Alex run over to me and by that time I was having trouble swallowing and felt off. They all jumped into action with Benadryl and a steroid. Then my doc walks in and says the one drug does this to many and not to be worried about it. As I’m typing this I am feeling way better, but I’m grateful for those that care for me.
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So glad you have such a great team supporting you during the therapy. I bet the Wookie spirit also kicks in when needed, and that is science, that’s a fact! F**k C. Get better. Did I say F**k C?
 
Well I think it’s about time to update things a bit. I had a reaction to the drug Oxilplaten while I was at the lab as I mentioned in my previous post. My doctor really wants me to stay on this drug as the new combination of drugs is bringing my numbers down which is a great thing. The tough part is that it makes chemo week a day longer and tougher. I now have to go to Outpatient chemotherapy at the hospital to get the Oxy as it needs to be given over time. My first visit took 12 hours and they had to increase the feed rate in order to get it all in. This resulted in another reaction while I was at the hospital and they took care of it quickly. I then had another reaction the following morning but I was able to avoid a bad reaction with Zyrtec and Benadryl. Not fun

So now my chemo week starts on a Saturday before treatment for bloodwork, then 12 hrs in the chair on Monday, 6 hrs in the chair on Tuesday (this is for the remaining drugs that my regular lab does), then I get my slow release ball of chemo that I take home with me ( or the Holy Hand Grenade which I like to call it) and yet again on Thursday to get it removed. This week is starting a day later as I failed to get my bloodwork done on Saturday because I got there too late.

All I can say is get yourselves checked and eat healthier because all this shit sucks. You feel sick, then you get drugs that make you sicker, and you are hanging on for dear life. I’m one of the lucky ones that have a ton of support, there are so many that don’t have a lot. So if you know someone going through shit, reach out to them often, visit as much as you can, and don’t forget to tell them you love them and how important they are to you. It will mean the world to them, I know it does to me.
 
Frank said:
Well I think it’s about time to update things a bit. I had a reaction to the drug Oxilplaten while I was at the lab as I mentioned in my previous post. My doctor really wants me to stay on this drug as the new combination of drugs is bringing my numbers down which is a great thing. The tough part is that it makes chemo week a day longer and tougher. I now have to go to Outpatient chemotherapy at the hospital to get the Oxy as it needs to be given over time. My first visit took 12 hours and they had to increase the feed rate in order to get it all in. This resulted in another reaction while I was at the hospital and they took care of it quickly. I then had another reaction the following morning but I was able to avoid a bad reaction with Zyrtec and Benadryl. Not fun

So now my chemo week starts on a Saturday before treatment for bloodwork, then 12 hrs in the chair on Monday, 6 hrs in the chair on Tuesday (this is for the remaining drugs that my regular lab does), then I get my slow release ball of chemo that I take home with me ( or the Holy Hand Grenade which I like to call it) and yet again on Thursday to get it removed. This week is starting a day later as I failed to get my bloodwork done on Saturday because I got there too late.

All I can say is get yourselves checked and eat healthier because all this shit sucks. You feel sick, then you get drugs that make you sicker, and you are hanging on for dear life. I’m one of the lucky ones that have a ton of support, there are so many that don’t have a lot. So if you know someone going through shit, reach out to them often, visit as much as you can, and don’t forget to tell them you love them and how important they are to you. It will mean the world to them, I know it does to me.
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The last part of your post is exactly why you have so many people’s support, you words let us see what a great guy you are, even in a difficult situation not only you manage to find the energy to pull through, but also find it in you to think of others in more than one way! Keep kicking ass and especially cancer’s ass big time big guy! I know you’ll kick my fat ass once we get to ride next time!
 
Frank said:
Well I think it’s about time to update things a bit. I had a reaction to the drug Oxilplaten while I was at the lab as I mentioned in my previous post. My doctor really wants me to stay on this drug as the new combination of drugs is bringing my numbers down which is a great thing. The tough part is that it makes chemo week a day longer and tougher. I now have to go to Outpatient chemotherapy at the hospital to get the Oxy as it needs to be given over time. My first visit took 12 hours and they had to increase the feed rate in order to get it all in. This resulted in another reaction while I was at the hospital and they took care of it quickly. I then had another reaction the following morning but I was able to avoid a bad reaction with Zyrtec and Benadryl. Not fun

So now my chemo week starts on a Saturday before treatment for bloodwork, then 12 hrs in the chair on Monday, 6 hrs in the chair on Tuesday (this is for the remaining drugs that my regular lab does), then I get my slow release ball of chemo that I take home with me ( or the Holy Hand Grenade which I like to call it) and yet again on Thursday to get it removed. This week is starting a day later as I failed to get my bloodwork done on Saturday because I got there too late.

All I can say is get yourselves checked and eat healthier because all this shit sucks. You feel sick, then you get drugs that make you sicker, and you are hanging on for dear life. I’m one of the lucky ones that have a ton of support, there are so many that don’t have a lot. So if you know someone going through shit, reach out to them often, visit as much as you can, and don’t forget to tell them you love them and how important they are to you. It will mean the world to them, I know it does to me.
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Hang in there - you have such a positive fighting spirit and so many people rooting for you in your life! Sending you all the healing vibes and anything else that you want just shout out... this community has your back. HUGS from Mark and me!
 
A pic from my fun today.
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The last couple of weeks have been fun. First my hemoglobin level dropped again for no apparent reason and I spent 12 hours in the ER to get slowly infused with 3 units of blood. Apparently my level was so low (5.8) that I needed a slow feed or I might have coded. That was fun getting discharged at 1am, but I wanted to go home. The really cool part was when I was ready to leave they got someone to wheel me out and he asked if I had a ride coming and I replied that I had driven myself there. Well he said he would get his coat and he wheeled me right to the door of my car….such a cool dude.

Now on to the Friday before last…..I noticed a pain in my knee and thought that I must have twisted it, but it got worse, much worse. I started losing sleep because of the throbbing pain and on Monday it was horrible. I was so weak from it that I couldn’t get out of a chair. So I called my doc to cancel and appointment we had that day and he asked why…..”call and ambulance and get to the hospital “ he said, so I did. At first they thought I had sepsis and admitted me because they needed to run blood cultures. So I ended up seeing so many doctors that I can’t name them all but they ranged from Infectious Disease to physical therapy. After 3 days they took fluid from my knee (not fun) and tested it to find out I had gout of the knee. Doc seems to think it’s due to the Oxyliplaten I’ve been on but gout meds and steroids quickly brought some relief. I thought I was all set to go home on Friday but my hemoglobin level dropped a bit due to all the fluids pumped into me so they injected some more iron. I was finally able to leave on Saturday afternoon and was so happy to get home again. I went to bed at 8pm and didn’t get up until noon the next day and I still felt tired. I guess that’s what happens when you don’t sleep for almost a week.

Long story short, food was decent but they always seemed to get the order wrong. The nursing staff……unbelievable!! They treated me so well, like I was a beloved grandpa which made my stay almost tolerable.

Now I have to set up next week to go back to my chemo mode….oi
 
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