Lesa's Book Critiques: The Sunday Potluck Club by Melissa Storm

Lesa's Book Critiques: The Sunday Potluck Club by Melissa Storm

Radiation Treatment Plan

Long afternoon and we are finally home. We met with the doctor and a CT scan was done to map the area they will target with their focused radiation beam. Sandi starts radiation next Wednesday afternoon. The plan, subject to change, is for 25 sessions. That means five days a week each week or until mid November.

The doctor is optimistic that radiation will work on this tumor as it has before. She faces significant complications due to the previous radiation, all the chemos she has had, and her significantly weakened medical state now.

In the meantime, she is to eat when she can, rest, and see her main cancer doctor for blood work and an office visit next Tuesday morning.

Chemo Round 3--Finished

Sandi is now home. We go see the doctor tomorrow for an office visit, blood work, and her white blood cell booster shot. Hopefully, there won't be any unpleasant surprises.

Chemo Round 3-- Day 5

We are finally home after running lots of errands and spending time at the hospital with Sandi. Things continue to chug along okay after they had to move her to a different room Sunday evening and the electrical problem. Whatever was wrong that caused the all the lights to lock on has been apparently fixed as they have a new patient in that room.

Sandi continues to get more chemo today. Chemo should finish tomorrow about mid day. Assuming she does not get yet more blood, the current plan is to release her late tomorrow afternoon.

Thursday afternoon we have to be back at the doctor for blood work, an office visit, and one of those shots she hates. The patch you see advertised everywhere on television is not something they use as the delivery is erratic at best. For Sandi and her issues, there is no way she can have it. So, we go in, she has the shot and then for the next 48 hours she gets sick and sleeps a lot.

Chemo Round 3---Day 2

Just got home from seeing Sandi at the hospital who was falling asleep due to the meds. She is doing okay at this point. She had a blood transfusion last night followed by her chemo premeds just after midnight and then the chemo started long before dawn.  When we arrived this morning she was sitting up and crocheting.

So far so good at this point. If things run like they did last time, in between the chemo bags, they will be doing multiple blood transfusions over the next several days. But, that is to come. For now, things are as good and stable as they can be.

Chemo Round 3

Late this afternoon Sandi was admitted to the hospital for the third round of chemo. Today she was doing okay and was not having any pain from the skull tumors (which are clearly growing again) though the nearby swelling at the back of her head was massively worse. If the swelling is the cancer mutating and spreading, as the doctors believe, I have no idea if this current chemo protocol is going to do a damn thing to help her.

But, she is in and awaiting chemo. We think they will start with blood transfusions tonight as she was so anemic Wednesday. They won't start anything until they get the lab work back and know how Sandi is tonight. Since they only have the one line into her to work with, we think things may extend beyond the five days unless they end up adding IV lines into her.

I know there is a lot of horrible stuff going on right now. But, if you have a moment to think of her and say a little prayer (or whatever works for you), I would really appreciate it. Thank you. 

Cancer Doc Day

By the time this post appears, we should be at Texas Oncology at Medical City Dallas Hospital. Sandi has an appointment for blood work and a visit with the doctor. Assuming no unpleasant surprises with her blood, we should also learn today when they plan to do the next round of in-hospital chemo.

We think that will happen right after Labor Day. But, with the influx of medically critical patients from the Gulf Coast, it is possible her chemo will have to be delayed. They were already having trouble getting patients into the hospital before Hurricane Harvey did what it did on the Texas coast.

Chemo Round 2 Finished--Sandi Home

Sandi has finished her second round of chemo and is back home where she belongs.

Chemo--Round 2-Day 3

Seen Sandi today and she is doing okay. Assuming things continue correctly she will be released sometime Sunday.

Chemo--Round 2- Day 1

Earlier today after taking care of some stuff at the apartment, Scott and I went to the hospital to check on Sandi. Last night and this morning they gave her additional doses of the antibiotic. She will have one more of those tomorrow and then she should be done with that.

This morning they gave her steroids as well as the premeds and then started the chemo. So far so good as there have been no issues.

Chemo--Round Two

Late this afternoon Sandi was admitted to the hospital to start the second round of chemo. This was done because her blood work today indicated she was strong enough to do this right now and it is very clear that the cancers are running amok. Just from last Thursday it was clear to me as well as her medical folks that the skull tumors had grown yet again. If they are growing there is no doubt that all the tumors she has are growing. Exactly when later today the chemo will start is in question right now as a few things have to be done to make sure all is okay.

As part of her stay she will also get the final three days of the antibiotic she was getting through the home health care folks. They never bothered to call and deliver the rest of her antibiotic nor did they send the home health care nurse that was supposed to come and do things. Knowing we were going to see Sandi's people today and knowing that most likely she would be admitted one way or the other, I did not call and badger the home health care folks about doing their damn jobs.

The chemo that starts sometime tonight is the one she was supposed to get in mid to late June so it is almost two full months late. Those involved believe that the delay will not be an issue. They believe her body has not built up resistance to it so we can go with the originally intended chemo cocktail she was supposed to get right after Memorial Day. Hopefully, they are right.

Folks seemed to be very attentive to her on the floor while we were there so I suspect all involved have been read the riot act over what happened before and are going to make very sure there is not another screw up. Something we are all counting on.

Doctor Day

After  a trip to the hospital for blood work and a doc visit, and then up to Plano so that Sandi could see what the apartment looks like and what we have left to do, we finally made the circuit and are back home.

Blood work was okay and relatively stable. Doctor was pleased about that, but was not pleased at how much worse her scalp cancers looked and how much worse her symptoms from her sinus tumor were. After doing some consultations, the decision was made to have us come back next Tuesday afternoon for blood work and a doctor visit. Assuming she is stable, they will then have her admitted to the main hospital to start chemo. During that process they will also finish this run of antibiotics for the bacterial blood infection. Once she finishes chemo, they can't use the antibiotics they are currently using on her for awhile, so that damn things needs to be fully gone .

The plan right now is for her to rest, work on what she wants to crafting wise or around the house, as she is able this weekend, and hope that when Tuesday rolls around things go as planned.

Sandi Update

We are finally home as it was a long morning in the doctor’s office. Most of the bloodwork was where they wanted it to be, though she is a bit anemic. They decided to leave that alone and not do any blood transfusions as she has been through so much in recent weeks. That fact as well as the fact that she is so cold to the point she is using multiple blankets and still shaking from being cold led them to pull a bunch of blood to rule out any blood infection.

Because of how very weak she is and other issues that mean she is very medically fragile right now, the decision has been made to hold off on chemo for now. They need her to gain some strength back. Simply put, chemo would most likely kill her. We have no choice, but to wait and allow the cancers to do what they do and hope for the best.  

We go back next Thursday for another office visit and blood work. Most likely, we will do the same thing the following week and then, assuming things have improved, the week after that she would go back in for more chemo. That is the plan today. Everything is very much up in the air depending on how she is doing and what the blood tests come back regarding the possible blood infection. Fingers crossed nothing is happening there.

Sandi at Rehab--Day 8

Small update as I am worn out and in a lot of pain---- they will release her to home on Tuesday. Then, Thursday morning, she will have a blood work/ office visit to see how she is doing. Based on how things are then, they will make a determination when to admit her back in for chemo. I have a sense that it won't be until the following Monday at the earliest.

Sandi at Rehab--Day 7

Earlier today Scott and I went down to the hospital and spent some time with Sandi. While there the doctor and the social worker popped in for a very brief visit. The plan is to release her next Tuesday.

Beyond that we don't know yet.

She will either come home for a day or two or will go straight to chemo. Since the tumors on the scalp are back and growing with a vengeance and her sinus tumor is clearly growing making things worse again (and those are the tumors we know about and can gauge things off of), she would much prefer to go straight over to the South Tower of Building A and get the chemo started again. Whether the doctors and Medicare will allow that to happen remains to be seen. We have made it very clear to all involved we would like to get the chemo started again asap. In just the two weeks the scalp tumors that could barely be seen and almost appeared to be gone are now was bigger across as well as vertically than they ever were before the first round of the aborted chemo. Pink in color, they are now bigger than a quarter and stand out on the surface of her scalp like eyes on the back of her skull.

Time is clearly of the essence based on what we can see and her symptoms. She is at least two weeks late on the chemo, if not three, at this point, based on the previous treatment plan. With her, when things get delayed the cancers explode in growth and run wild like a spark in the wilderness that becomes a raging inferno. This also gives the cancers more time to mutate and this resist the current chemo. So, they really do need to get on with things as soon as they possible can.

She thinks she is ready now. Considering the fact that she is still on a liquid diet only and can not have hot tea or soda (which is making her crazy) as well as the fact that she is shaky on the walker, I don't think she is ready. I think she is better than when she started last Friday. Will she be ready by Tuesday? I don't know? Is she ready for chemo? I have no idea.

I do see what is happening and I realize the situation they have to consider. It is because I do see what is happening as well as knowing her history, I worry.

Sandi Update 6/28/17

Back home after making a run to the house and then going to see Sandi at the hospital. Today is a milestone that we could have done without as she has been hospitalized for a month as of today. She had a bit of a rocky afternoon yesterday leading up to the MRI. They did that and for awhile she was a bit better, but apparently she was again rather confused overnight. That extended into this morning and continued while we were there. A conversation with her today was a bit of a roller coaster as she kind do went in and out. It is very shard to explain in words, but those involved with her care repeatedly assured me what Sandi is doing is normal and not anything to get upset over.

The brain wave test apparently indicated everything was okay. The MRI was thought to be "good" as, though it showed the extensive damage from 2010 and 2011 when she had a number of strokes, it did not show new damage. That confirms the idea she did not have a stroke. If she had a seizure last week it did not do anything that was strong enough to do damage. That is also very good news.

The plan is to move her to rehab as soon as possible where she will be from ten days to two weeks. Medicare has to approve this so physical therapy and occupational therapists will come work with her today to write reports and submit them to Medicare. Everyone involved believes there is no question that Medicare will approve her moving to rehab. Apparently there is an inpatient rehab unit at Medical City Dallas Hospital that opened in the last year so they would move her there. They really want to get her there tomorrow, but I think it is more likely she would not move until Friday.

I am not thrilled about her having to change rooms again as she is still upset over the last move when she had to change rooms due to Medicare rules. She is still upset over that and feels like things were lost. that move comes up multiple times each visit. So, moving her again could trigger a new round of that complaint though she seems to understand that such a move will be necessary.

Once she successfully completed rehab, they would then move her back to the main hospital and do another round of chemo. This means, if everything goes right, she is most likely looking at another three weeks in the hospital. If I can orchestrate things here well enough, when she comes home she would go to the house and not back here to the apartment. I'd still have to pay out the lease till August 21st , but being on the ground floor would help her a lot.

Sandi Update for 6/21/17

Spent part of the morning today at the hospital and have seen her doctor. Though she is very out of it from the meds, things seem to be on the right track. She remains on a liquid diet as they want her pancreas numbers. Those finally seem to be trending in the right direction. She was moved to a new room yesterday, as required by Medicare, and will remain there through the weekend.

The current plan is that Sandi  might be coming home the early part of next week. Once home, she will have about a week here. After that week off, they will readmit her and start the next round of chemo over five days.

Sandi Update 6/18/17

After yesterday's scare when her heart rate and BP soared during the second transfusion causing them to put Sandi on a heart monitor and inject multiple drugs into her, today has been a bit calmer. No blood transfusion today helped that situation. She is still NPO which means a clear liquid diet. She also says that her hair, which was evacuating her head a bit the last couple of days thanks to the aborted chemo, is now all gone as the nurses took care of that today.

Scott and I stayed home as the heat yesterday did a bit of a number on me. Been out in it way too much these past couple of weeks and it has played havoc with my own health issues. I hate the summer. So we stayed home today only to have the AC unit upstairs pretty much go out on us this afternoon. Blowing a little cold air, but nothing like it should. So, after trying to box some things upstairs in our bedroom, I retreated to the lower level and have spent much of the day the floor in front of the box fan watching television. Not very productive, especially with so much to do here, but the body was not going to be cooperative on so many levels.

Sandi Update--Saturday 6/10/17

Went this afternoon and saw Sandi and she is doing better. Her other main cancer doctor was there and says that all the tests come back good on the liver, kidneys, as well as the pancreas. If anything was going on, the blood dialysis deal seems to have worked and addressed things a bit. He wants to talk to Sandi’s main cancer doctor to see what he wants to do about restarting chemo. He also wants to discuss with him of they are going to do another blood dialysis treatment or not. My sense was he felt it was okay to go back and start chemo again ASAP, but wants to discuss things with her main guy. 

What they refer to as scalp lesions and are tumors have shrunk. The one on her tonsil has shrunk, as has the one in the right side of her neck in the lymph node. They think the sinus one is unchanged, but have not done anything imagery wise to confirm that. The others they can see and feel so they can tell what happened. The sinus one they can’t see and her symptoms have not changed so they figure it is still the same. Of course, with no imagery, they have no idea the status of the dozens and dozens of other tumors scattered throughout her body according to the recent PET Scan are doing now either.

She was sitting up when we got there and asserting herself as she told staff what she wanted and how she wanted things done. Sandi is not a meek patient and never has been going back decades. She wants to do her thing and do it all her way. Even the doctor was laughing about it and said that was proof she was doing better. As a result, he is expanding her diet a little more and seeing how that goes.

Physical therapy wants her up and walking the halls and she is not having it until they pull the catheter. They have no plans to do that yet, so she isn’t walking because she has had very bad experiences trying to do physical activity when it is in. Knowing that I don’t blame her, but those in charge of her want to do what she is told and she is not in the mood for that one bit.

For the first time in about a week, she is back crocheting stuff—cat toys in this case for the City Of Plano Animal Shelter—though you can’t see them in the picture. She wants out, but clearly is not ready for that. I have no idea right now when they would let her out as another blood dialysis treatment would not happen until Monday at the earliest if they do that. I specifically asked and the doctor today was not sure if they have to start the chemo over from square one—that means five days when they start—if they can just pick up where they left off which would mean about three days. Clearly, I am not a doctor nor do I play one on television, but since the blood dialysis deal was done to strip chemo out of her body and that includes at least some of the good or correct chemo, it seems to me they would have to start all over. But, I don’t know and they don’t have that figured out yet.

So, that is where we are at as of today. I think we have turned a corner on this latest crisis. Yes, the docs, nurses, and drugs did a lot of work, but I think the many thoughts, prayers, and well wishes from all of you played a major role in saving her. I honestly thought a few days ago we were going to lose her. Thankfully, that did not happen. And we thank you, many of you we have never met, for keeping her in your hearts and minds and willing her through this. Thank you.

Chemo Stopped

By the time Scott and I got home yesterday, I was not in the shape to post this or do much of anything.  There has been a massive screwup at the hospital with Sandi's chemo.

There are multiple drugs in her chemo cocktail and they are supposed to run into her in a certain sequence. The second drug they gave her Thursday and Friday was the wrong drug because somebody down in pharmacology read the order wrong. The wrong drug name got into the system wrong and therefore when the nurses on the floor did their checks they did not catch the error. It was only after yet another nurse doing a quality control audit independent of everybody else finally caught the error yesterday afternoon.

This easily could be disastrous in terms of Sandi's liver and kidneys. The early tests they did last night and this morning as they ran multiple drugs of different types indicated that things were preliminarily looking okay. As far as she knows this morning that is still true.

But, her doctor has come in this morning in the last hour and explained to her that the chemo is not just delayed, but stopped all together while they deal with this issue. Later today, somebody is going to come in and hook some sort of port device into her existing port beneath the skin. This second port, which will be external and hooked into her current port, will allow them to do some sort of transfusion deal where they will drain bad stuff out of her and pump in good stuff. I don't really know how this is supposed to work.

This process could take five days. It depends on how she does and what results they get back. They think she is okay, but they are doing this to try and make sure she suffers no permanent liver or kidney damage. Both were not in that good a shape as it was and this disaster certainly has not been good for either one.

As to the chemo.....it looks like it basically has to be done all over from day one. Whether they will do that in the hospital right after this deal and just keep her in there through his office everyday for five days, or what we don't know. The doctor isn't worried about that right now. He is very concerned about what has been done to her and trying to mitigate the massive screwup.

You know it is really bad when multiple bigwigs in charge of various things at the hospital all come  down in teams and separately to apologize profusely and to let her know they are willing to do anything for her. All that is well and good, but it does not turn the clock back and fix anything.