Hey guys- sorry for the long silence.
I got home on Thursday, feeling week and exhausted, but otherwise not too bad. Unfortunately, the next few days consisted of my lowest points. My mouth got very sore, and my stomach was very nauseated, so eating and drinking became difficult, and I became dehydrated. Sunday, I was feeling so poorly that Ty had to start an IV and give me a few bags of fluid. That got me through the roughest part, and with a lot of soup and meds, by Monday morning I felt much better.
I worked all week, and every day I've felt better and better. As of today (Thursday) I now feel better than I did before my hospitalization- better than I've felt for months, actually. I'm back off all my support meds and on a normal diet. My mouth is pretty much healed, other than the taste being mostly gone again. My back pain is gone- which is something that wasn't even accomplished prior to my hospitalization. (More about that in a moment.) All in all, I feel good. We've been cleaning the house and getting stuff squared away at the shop so that everything is in order for my next round, and I won't have anything to deal with except resting and healing.
So when we first met with Dr Gounder about the drug trial, he mentioned something that may now be relevant. Apparently there's been a strong trend in the research, that even if the drug does not succeed in shrinking the tumors by itself, if people go back to chemotherapy afterwards, it seems to work better than normal for a while. Like the drug manages to at the very least, weaken the defenses of the tumors, making them more vulnerable to the chemo drugs. It's very early to make any assumptions, but it's definitely a possibility that could happen with these two rounds of treatment. For the moment, I'm taking it as a hopeful sign that my back pain disappeared so quickly after the first round of chemo. Though it had gotten better and worse at various times, it really hadn't reached a point of disappearing at any point during the drug trial. It will be a few more weeks before we get any solid information though. My next round of chemo starts Friday the 3rd. The pump will be on until Tuesday evening. After that, it will probably be 2 weeks or so until they schedule the scans, to give the second round time to do it's job. If the scans show that we shrank the tumors sufficiently to where none of them are posing any immediate threat (like trying to collapse my lung again), we'll move on to the medication Dr Kang is working on procuring from the FDA for me.
So that's where we're at now. Until the 3rd, it's life as usual. Then we start the whole fun process over again.
Time for bed- night all!
Thursday, January 26, 2017
Monday, January 16, 2017
Can't Sleep, Clowns Will Eat Me...
Well, it was bound to happen sooner or later- I'm officially tired of sleeping. This bed is horribly uncomfortable, and there doesn't appear to be a sufficient quantity of drugs in my system to overcome it tonight. Granted, I did doze off around 8pm, so, I suppose it's only fair that I'm awake now at nearly 3am and feeling like going back to bed is probably not an option any time soon. I did just take more muscle relaxers, since one of the biggest problems with lying in bed all day is the constant pain and spasms. But, still don't think sleep is coming for me any time soon.
Luckily, it's now technically Tuesday, which means only 2 more days of imprisonment. I am counting down the hours until Thursday morning when I can finally get some freedom- freedom of not having to drag an IV pump around with me everywhere, freedom to take a REAL shower, freedom to go home and see my babies and my real bed. Sigh... we're almost there. Considering I've been locked in here for 8 days already, I think I've held up fairly well overall. But even my patience appears to have limits.
They just switched out my chemo bag for the night... just one more bag to go before my freedom. Wish me luck... And sanity.
Luckily, it's now technically Tuesday, which means only 2 more days of imprisonment. I am counting down the hours until Thursday morning when I can finally get some freedom- freedom of not having to drag an IV pump around with me everywhere, freedom to take a REAL shower, freedom to go home and see my babies and my real bed. Sigh... we're almost there. Considering I've been locked in here for 8 days already, I think I've held up fairly well overall. But even my patience appears to have limits.
They just switched out my chemo bag for the night... just one more bag to go before my freedom. Wish me luck... And sanity.
Sunday, January 15, 2017
On the Mend
So the broncoscopy appears to have been successful, my left lung is functioning well again. I've been off oxygen for days and my stats are staying up. So that's good news.
The final decision was for me to do chemo first, so we started that a few days ago. Normally, I'm allowed to get my first 2 drugs in the hospital, and take the longer one home with a pump for 4 days afterwards. Unfortunately, because it was a Friday before a holiday weekend, they were not able to coordinate getting the pump to me in time. So I'm staying in the hospital for the full length of time (5 days) to get the chemo done. The up side is, at home I'm normally mostly on my own during the day, whereas here I've got 24/7 coverage and IV hydration to keep me feeling good. My pain regiment is pretty much perfected, and if any other side effects crop up, the staff are fast on hand to fix them. So this is probably the most comfortable chemo week I've ever spent, and I'm hoping my recovery time will be easier because of all the extra support as well.
It's Sunday today. My last treatment will finish up late Wednesday night (too late to discharge me), so I'll be released Thursday morning. In addition to the chemo, at some point they'll be administering my Superman Bone Juice, since we were due for that this weekend as well. Nice to get everything done at one time, anyhow. I'm sure there will be various follow-ups and whatnot in the next few weeks leading up to my next round of chemo, but we haven't discussed those in detail yet. For now, it's all about getting me through the next few days until Thursday. And as much as it's nice to have the staff here, I do miss my home, my bed, and my boys.
So that's it for now. As far as I know, we're planning on 2 rounds of chemo, then possibly some radiation, and then the drug that Dr Kang is looking into for us. As always, more updates whenever they arrive!
The final decision was for me to do chemo first, so we started that a few days ago. Normally, I'm allowed to get my first 2 drugs in the hospital, and take the longer one home with a pump for 4 days afterwards. Unfortunately, because it was a Friday before a holiday weekend, they were not able to coordinate getting the pump to me in time. So I'm staying in the hospital for the full length of time (5 days) to get the chemo done. The up side is, at home I'm normally mostly on my own during the day, whereas here I've got 24/7 coverage and IV hydration to keep me feeling good. My pain regiment is pretty much perfected, and if any other side effects crop up, the staff are fast on hand to fix them. So this is probably the most comfortable chemo week I've ever spent, and I'm hoping my recovery time will be easier because of all the extra support as well.
It's Sunday today. My last treatment will finish up late Wednesday night (too late to discharge me), so I'll be released Thursday morning. In addition to the chemo, at some point they'll be administering my Superman Bone Juice, since we were due for that this weekend as well. Nice to get everything done at one time, anyhow. I'm sure there will be various follow-ups and whatnot in the next few weeks leading up to my next round of chemo, but we haven't discussed those in detail yet. For now, it's all about getting me through the next few days until Thursday. And as much as it's nice to have the staff here, I do miss my home, my bed, and my boys.
So that's it for now. As far as I know, we're planning on 2 rounds of chemo, then possibly some radiation, and then the drug that Dr Kang is looking into for us. As always, more updates whenever they arrive!
Thursday, January 12, 2017
Bumps in the Road
Well it's been an eventful couple of weeks.
Around the time of our last NYC trip, I was feeling the tiniest bit of a coughing/pressure sensation returning. After the trip, it rapidly got worse, until we ended up doing an extra CT scan between visits. The scan showed that there was significantly increased growth to the mass in my chest. Because I felt okay, and we had a big scans & biopsies appointment coming up with Sloan-Kettering anyway, we noted the changes, but did not alter anything about my treatment at that time. For a few days, I actually started feeling better; my cough seemed to be clearing out, and I had more energy.
Then my cough rapidly increased, until Saturday, when I felt as though I couldn't breathe at all. I resisted going in to be seen and tried to just rest all day Sunday, but I was at the point that I could barely get off the couch because if I stood up I'd have a coughing fit. So Sunday night, we came to the ER at Johns Hopkins. They got us in quickly and started doing tests. When they got to the chest x-ray, we found the problem- my entire left lung had essentially collapsed. It was not moving any air at all in or out.
So they admitted me to the hospital, did some more tests, and determined that the first step was to do a procedure called a bronchoscopy, in which they would send a tube with a camera down into my lung to find out what the problem was, and try to fix it. They also did one more CT scan, and decided based on the results that the experimental treatment probably is not working the way we want it to after all. So currently I have stopped the trial drug, and Sloan-Kettering has me off the trial for now.
I spent Monday and Tuesday basically sitting propped up in a hospital bed trying to breathe. Being on oxygen and IV drugs helped a lot, and at some point on Tuesday part of my left lung actually opened back up on it's own, and I could breathe much easier. They did the procedure on Wednesday, and basically cut and cauterized some tissue out of the way to open up my airway and allow my lung to fill properly. There was one section that apparently did not respond entirely, but most of my lung is open now and my breathing is normal, so we're calling it a success.
As a minor side note, they did take tissue samples to biopsy. It's unlikely that the biopsy will reveal anything useful, but there is still a slim chance that we may see changes to the tumor's DNA as a result of the trial drug. I do not know at this time whether that will make a difference in the future treatments or not, since part of the drug trial involves not compromising the patient's health, and collapsed lungs are probably not something they like to see. So that's a different bridge that we will have to cross when the results come back in a couple weeks.
The next steps are to determine where we go from here with my treatment. Because my lung mass and spine have always been the two largest and most irritating sites, they are considering having me do some radiation treatment aimed at those sites first, to try to shrink the biggest problem areas quickly and directly. The second option is to go straight back to chemotherapy for a couple rounds, and then look at other options including radiation, immunotherapy, and other clinical trials. So it sounds like tomorrow/today (Thursday) my team is going to sit down and discuss the pros and cons of where to start, and I will almost certainly receive my first round of chemo or radiation before I'm discharged.
So, unfortunately things are not going quite as smoothly as we hoped they were. But we are staying positive and looking ahead at our options. Meanwhile, I'm comfortable, the staff at Hopkins are all great, and they've been keeping me well fed and hydrated, and I have a button I can push for pain meds if I need them. So right now I'm just trying to rest and recuperate, and we'll see what the next stage brings.
As always, thank you for your support and prayers. I will post an update when I have more information.
Around the time of our last NYC trip, I was feeling the tiniest bit of a coughing/pressure sensation returning. After the trip, it rapidly got worse, until we ended up doing an extra CT scan between visits. The scan showed that there was significantly increased growth to the mass in my chest. Because I felt okay, and we had a big scans & biopsies appointment coming up with Sloan-Kettering anyway, we noted the changes, but did not alter anything about my treatment at that time. For a few days, I actually started feeling better; my cough seemed to be clearing out, and I had more energy.
Then my cough rapidly increased, until Saturday, when I felt as though I couldn't breathe at all. I resisted going in to be seen and tried to just rest all day Sunday, but I was at the point that I could barely get off the couch because if I stood up I'd have a coughing fit. So Sunday night, we came to the ER at Johns Hopkins. They got us in quickly and started doing tests. When they got to the chest x-ray, we found the problem- my entire left lung had essentially collapsed. It was not moving any air at all in or out.
So they admitted me to the hospital, did some more tests, and determined that the first step was to do a procedure called a bronchoscopy, in which they would send a tube with a camera down into my lung to find out what the problem was, and try to fix it. They also did one more CT scan, and decided based on the results that the experimental treatment probably is not working the way we want it to after all. So currently I have stopped the trial drug, and Sloan-Kettering has me off the trial for now.
I spent Monday and Tuesday basically sitting propped up in a hospital bed trying to breathe. Being on oxygen and IV drugs helped a lot, and at some point on Tuesday part of my left lung actually opened back up on it's own, and I could breathe much easier. They did the procedure on Wednesday, and basically cut and cauterized some tissue out of the way to open up my airway and allow my lung to fill properly. There was one section that apparently did not respond entirely, but most of my lung is open now and my breathing is normal, so we're calling it a success.
As a minor side note, they did take tissue samples to biopsy. It's unlikely that the biopsy will reveal anything useful, but there is still a slim chance that we may see changes to the tumor's DNA as a result of the trial drug. I do not know at this time whether that will make a difference in the future treatments or not, since part of the drug trial involves not compromising the patient's health, and collapsed lungs are probably not something they like to see. So that's a different bridge that we will have to cross when the results come back in a couple weeks.
The next steps are to determine where we go from here with my treatment. Because my lung mass and spine have always been the two largest and most irritating sites, they are considering having me do some radiation treatment aimed at those sites first, to try to shrink the biggest problem areas quickly and directly. The second option is to go straight back to chemotherapy for a couple rounds, and then look at other options including radiation, immunotherapy, and other clinical trials. So it sounds like tomorrow/today (Thursday) my team is going to sit down and discuss the pros and cons of where to start, and I will almost certainly receive my first round of chemo or radiation before I'm discharged.
So, unfortunately things are not going quite as smoothly as we hoped they were. But we are staying positive and looking ahead at our options. Meanwhile, I'm comfortable, the staff at Hopkins are all great, and they've been keeping me well fed and hydrated, and I have a button I can push for pain meds if I need them. So right now I'm just trying to rest and recuperate, and we'll see what the next stage brings.
As always, thank you for your support and prayers. I will post an update when I have more information.
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