BEST DAY EVER!

The day before yesterday grandma had her PT scan and today we found out the results

If I did not believe in a Christmas miracle I do now. GRANDMAS CANCER IS GONE!!!! To all that wished her the best thank you so so much. I don’t think I’ve ever been so relaxed and happy. Her next appointment is in six months on May 30th 2013 for a follow up. Today November 29th 2012 is now the best day ever….

 

Back to the fluids

It’s been some time since Grandma was in the hospital. I stopped writing because Grandma was back at home and the changes she was needing to make were going to be slow. It’s August 24th and we just saw Grandma’s chemo doctor. He is pleased with the way she looks, but is disappointed with her being dehydrated and losing weight again. He asked her why she keeps fighting me on eating. He then said what he would like to do is have her get fluids today and then early next week, put her back in the hospital for three days. He said because how frail she is right now, that having a feeding tube put in would be a bit dangerous because they don’t like putting someone with her low blood pressure unconscious for the 15-minute surgery. The first day in the hospital she would be getting the fluids and calories she needs, the second will be the surgery and the third will be making sure she is handling it ok. He said if all goes well it would be just three days.

Grandma has been very difficult the past week and a half. She does not want to eat and unless you watch her, she will give her food to the dog. She boldly lied to the doctor saying she can’t understand why she is losing weight. I spoke up and let him know she’s fighting us tooth and nail about eating. It’s almost as if she feels that we are trying to make her fat.

If you have not been reading the blog, Grandma got out of the hospital about three weeks ago. She was in St Mary’s for seven days. During her stay, she had some ups and some downs and then at one point, they thought she was going to stroke out because of her blood pressure shooting so high. I’ve been with Grandma every day during all of this. I even stayed with her all seven days at the hospital. Today, I decided to come home while she was getting her fluids rather than sit with her at the Cancer Center. When she is done in a few hours, I will go pick her up to bring her home. My hope is that maybe she will see how disappointed and upset I am since I did not sit with her. And maybe, she will get it in her head that she needs to eat.

She keeps talking about how 2000 calories is too much for her, but that’s what the doctor wanted her to get to. Even if she were eating 1000 calories a day, it would be better than the 100-300 she sometimes intakes. I will bring her a drink and it will sit in the same place all day. I have no clue why she is fighting so hard not to eat. After she gets her fluids today, she will have the weekend to straighten up and get some weight back on her or hospital bound she will be on Monday.

Hospital & Doctor’s Orders

I haven’t written for a few days, but it’s been with good reason. We brought Grandma to the hospital Saturday night. She was admitted and our journey has carved a new path for us to take. Being that it is Wednesday and this story really begins 6 nights ago, I will do my best to account for all the major turns we have taken since then.

Friday, July 27 – 9:00 p.m.
Robyn came home from work around 5:00 p.m., but left again to meet some friends for dinner. I wasn’t feeling too well and since Grandma was resting, I laid down, too. The next thing I remembered, Robyn was nudging me to wake up. It was 9:00 p.m. I hustled out of bed and woke Grandma up to take her medicine. We made our way down the hallway and into the kitchen. She took what she could, but said she really wanted to get back to bed. A short time later, we heard her start to gag, cough and vomit. Robyn and I rushed to her room to help her calm down and get cleaned up. Grandma would calm down for a few minutes at a time and then start vomiting again.

Saturday, July 28 – 12:00 a.m.
After several bouts of vomiting, we realized she wasn’t able to stop because she couldn’t calm down enough. We gave her half of a Xanax tablet as the doctor directed us to. This helped her calm down enough to fall asleep. She slept through the rest of the night.

7:30 a.m.
I got up to give Grandma her morphine and then went back to bed.

9:30 a.m.
I got up to start the day. I got Grandma’s medications ready for her and then brought her in the kitchen. She was very unsteady on her feet and I was grateful we had the walker for her. She sat down and we went through the usual routine.

11:00 a.m.
Grandma starting vomiting again. Robyn helped get her calmed down and cleaned up. Once Grandma was resting, I asked Robyn what we should do. She said, “If we can’t get this under control today, we need to take her to the hospital. She isn’t intaking much and when she does, she can’t keep it down.” I agreed with her and we made the plan to get some food in her well before her medication and see if she was able to keep it down. Then, we would proceed with her scheduled medications at 2:00 p.m. If that stayed down, we would continue with that pattern. We knew that Grandma wanted to stay home and not go to the hospital if she didn’t have to.

12:00 p.m.
Grandma ate some instant mashed potatoes mixed with cream of mushroom soup. She ate about 1/4 cup of the mixture. It seemed to settle ok so we decided at 2:00 p.m., we would give her a bit more before her medicine.

2:00 p.m.
We gave Grandma some of the soup mixture, which she said burned her throat and mouth now even though there was nothing different about it. Grandma took her meds as scheduled with no problems. She coughed up a little bit of phlegm, but no vomit. Afterwards, Grandma went back to bed.

6:00 p.m.
We woke Grandma up and started her medication process. She spit up a couple of times, but it was only because the pills got caught in her throat. We got some soup in her and finished her medications, then got her back to bed.

9:00 p.m.
We heard Grandma gagging. Rushing to her room, Robyn saw her vomit quite a bit. She got her calmed down and cleaned up. While she was changing Grandma’s sheets, she looked at me and said, “We need to take her to the hospital. We have done everything we can here, but we need to get her on fluids and get her nausea under control and we can’t here.” I sat and thought about that for a while. Grandma was resting. I got online and talked to a few friends about the situation while I thought about what to do.

10:00 p.m.
Grandma started gagging again. Robyn sat on the bed with her and I called the doctor. The answering service connected me with Dr. Ballou, the chemo doctor, and he told me to take Grandma to St. Mary’s. I called Linda to let her know what we were doing and told her where we were going. I started packing my computer up while Robyn packed a bag for Grandma. Once we felt we were ready, we got on our way.
11:30 p.m.
We arrived at St. Mary’s Emergency Room. We were immediately taken to a curtained area and after about 10 minutes, we were taken to a patient room in the ER. The ER doctor came in to take a look at Grandma and I told him that we were told by Dr. Ballou to bring her in. The ER doctor gave Dr. Ballou a call and returned to say that Grandma was a direct admit to the hospital and after a few tests, she would be taken to a guest room. After the ER nurse failed to place an IV, the LifeFlight nurse came to do it. He placed it in the crook of her arm where we had to continue to remind Grandma to not bend her arm. I started getting flashbacks of the one chemo visit where Grandma couldn’t sit still. Linda showed up about midnight and sat with us until Grandma was taken to her guest room.

Sunday, July 29 – 1:15 a.m.
We were taken to what would become Grandma’s home for several days – the sixth floor of St. Mary’s. Thankfully, it was a private room with a full bath, two chairs (one is a rocking chair) and a fold out sofa bed. The nurse and tech got us settled in and got Grandma’s fluids started. We were told that Dr. Ballou had reviewed Grandma’s tests that were done in the ER and that he planned on doing a stomach X-Ray in the morning and he should be in around 8:00 a.m. to check on her. They put a yellow bracelet on her wrist indicating she was a ‘fall risk.’

1:30 a.m.
Linda went home and Robyn made a trip back to the house for a few things to make the room more hospitable.

3:00 a.m.
Robyn went home and Grandma and I began our first night in the hospital. The night was somewhat of a blur because Grandma was so restless and kept trying to get out of bed. I had to keep telling her to stay in bed and to keep her arm straight. Finally around daybreak, I was able to sleep because she was asleep.

7:00 a.m.
We were awoken by the nurses who were administering Grandma’s oral morphine.

8:00 a.m.
She was taken to X-Ray to do the stomach test on Grandma. I asked when the doctor would be in. They didn’t know. Throughout the day, Grandma continued to be restless and began talking nonsense. She would go through periods of confusion where she didn’t know where she was for a moment and then suddenly would say, “I’m still in the hospital, aren’t I?” It was scary and hard to handle because I couldn’t explain anything to her. She knew who I was and recognized people, but got very confused about her surroundings and circumstances. Because of this, I had to keep a close eye on her because she kept trying to get out of her bed on her own. At that point in time, she was still recovering from her vomiting spells and hadn’t had any sustenance other than IV saline in more than 24 hours. Besides being hooked up to machines, she just didn’t have the strength to stand unassisted.

2:00 p.m.
Robyn came back to the hospital after she helped her dad at church and had some lunch for me. It was a relief to have her there because she could help watch Grandma while I tried to rest. Grandma continued to be restless and confused throughout the afternoon. She would sleep for about 5-10 minutes, wake up confused about her surroundings and start talking about how she needed to make dinner. We would say, “If you need dinner, we’ll ask them to bring you some.” Then she would realize where she was. At one point she told us she had sauce in her pockets and that if she had 10 minutes, she could finish dinner. She fell asleep and when she woke up, she looked around the room and said, “where’s that garlic bread?” Robyn asked her if she wanted some garlic bread to eat and Grandma said, “Oh shoot. I’m still in the hospital.”

3:00 p.m.
My friend Kevin and his girlfriend, Wendy, stopped by to say, “Hello.” They brought some flowers for Grandma and a couple of sodas for Robyn and me. They couldn’t stay long, but said that if we needed anything to let them know. Robyn said after they left that she felt like crying because it was so nice of them to do something like that. After they left, we discovered that the air conditioner in the room was good for keeping soda cool.

4:00 p.m.
Robyn went home for a little while to get some laundry done, check on the dogs and get some dinner for us. Around 4:45 p.m., Linda and her kids came to visit Grandma. They stayed for about an hour and then went to get dinner for themselves. While they were visiting, Grandma was acting halfway normal. I took this as a good sign until Linda tried to feed her some pudding and Grandma said, “Don’t give me that. I already had blood this week. Quit trying to shove blood down my throat!” She thought the pudding was blood.

7:00 p.m.
The nurse gave Grandma her oral morphine.

7:30 p.m.
Robyn came back with dinner and additional clothes for me. We settled in for the night and took turns keeping Grandma in bed. Throughout the evening, I continued to ask the nurses and techs when Dr. Ballou would be visiting. The night nurse, Jenni, said that he comes at odd times and it can sometimes be as late as midnight before he checks on a patient. I also told her that I was concerned that she wasn’t getting her medications as scheduled. Jenni then explained that they had to administer them as the prescriptions were written. Most of the medications state ‘as needed,’ including her liquid lortab, which means that legally, the staff can’t dispense any other way. Even though the doctor instructed us otherwise and we found a good balance of what worked for Grandma at home, now she wasn’t receiving her medications until she asked for them.

10:30 p.m.
My friend, Brian came to visit Grandma. He said hello to her and then took a seat.

11:00 p.m.
The nurse, Jenni, came in to let us know that Dr. Ballou was on the floor and he should be down to see Grandma soon.

11:30 p.m.
The doctor still hadn’t been in the room.

Monday, July 30 – Midnight
The new night nurse came in to check Grandma’s vitals. I asked her if Dr. Ballou was on his way in to see Grandma. She had a shocked look on her face and said, “He didn’t come in here?” From that question, I knew he had already left the hospital. I told her, “No. He didn’t come in here. At 11, Jenni came in to let us know he was on the floor, but we never saw him come in.” She responded with, “Oh. Well, he left around 11:30 p.m. I swore I saw him come down to this end of the hallway and Charlotte is his only patient on this side. Maybe he peeked in and thought you were asleep.” Robyn hadn’t fallen asleep yet that evening and she would have heard someone step into the room. Needless to say, we didn’t see the doctor that night. The nurse did tell us the plan of action. Dr. Ballou was concerned about Grandma receiving enough nutrition so he ordered a PICC line be installed the next morning so she could start receiving supplemental nutrition through it.

1:00 a.m.
Brian left for home and Robyn agreed to stay at the hospital and help me watch Grandma overnight. She made a trip back to the house to change clothes and check on the dogs before settling in for the night. Around 1:45 a.m., she returned and I tried to go to sleep. She told me the next day that she didn’t get to sleep until around 4:00 a.m. because Grandma kept trying to get out of bed and it wasn’t until she fell asleep that Robyn was able to sleep herself. The blessing and the curse is that Robyn is a very light sleeper and when she would hear Grandma shuffle in the bed she would sit up with a jolt to see what she was doing.

6:00 a.m.
The nurses and techs came in to change Grandma’s IV. Robyn left to get ready for work at 6:30 a.m. She ended up taking two hours off work to rest at home because she didn’t feel like it was safe for her to drive.

7:00 a.m.
They gave Grandma her oral morphine.

12:30 p.m.
The team came in to prep Grandma for a PICC line. Robyn was about to head back to work after bringing me some lunch. They installed the PICC line in Grandma’s room, but needed it to be as sterile as possible, so I had to wear a gown and mask. They were done with the procedure in about 35 minutes. After they were done, they rehung her IV saline and electrolyte replacements. We were told that she would start receiving the nutritional supplement later in the evening. Later in the afternoon, she started talking nonsense again. She thought we were in L.A. and was looking for her file cabinet.

6:30 p.m.
Robyn arrived with dinner for us. We settled in to watch some TV while Grandma rested. She was still trying to climb out of bed frequently, but was much more coherent and knew where she was. Brian showed up for a visit and insisted that I take a walk with him. Since Robyn was there, I felt comfortable enough to leave the room. We were only gone for about 15 minutes, but it was good to stretch my legs. Brian left after about an hour and half and Robyn and I finished our television program.

10:30 p.m.
Dr. Ballou walked through the door. He took a seat and spent a few minutes with us explaining what was going on. He said that her electrolytes were in much better shape – he said they were pretty much at normal levels and that the challenge was to keep them there. With that in mind, they were going to continue with the electrolyte replacements and IV saline. He gave us some goals for Grandma to meet before he would release her. He said he wanted to see her eating 1,000-1,500 calories per day and moving around unassisted. He said she would have to demonstrate she was doing that for a few days before he would consider releasing her. We felt better knowing what his goals for her were.

11:00 p.m.
While the tech was checking Grandma’s blood sugar level a random male patient wandered into the room. The tech’s back was to the door and she didn’t see him come in. He simply stood in the doorway and stared at Grandma. Robyn was laying on the bed and I was sitting in one of the chairs. I noticed that he had an erection and was most definitely ‘out of it.’ That gave me one more reason to continue to stay with Grandma.

Tuesday, July 31
The nurses and techs came in as their routine dictated. Grandma seemed to be acting stubborn about her eating habits again. She started saying that her throat burned and she was in pain and she couldn’t eat. The past few days she had been on the morphine and hadn’t had a problem with pain when eating, but found herself getting full quickly. Now, she was complaining of pain again.

In the afternoon, Grandma had a small vomiting spell and it soiled her bed clothes. I called the nurses/techs and told them what happened. A tech came in and simply flipped the pillow over and folded the blanket down rather than changing the bed clothes. With the continuous change of the nurses and techs, we have had some very good ones and some rather poor ones. I was not happy with what that tech did and when the shift changed, I mentioned it to the nurse and she immediately changed the bed clothes. There have been other times where the nurses and techs help Grandma out of bed, but don’t replace the rails on the bed. We have been told that since she is a ‘fall risk’ that they should be accompanying her into the bathroom so she doesn’t slip and fall. Some of the nurses/techs get her into the bathroom, but don’t stay with her.

9:00 p.m.
The nurses came in to check on Grandma on their shift change. I asked them if she received her morphine at 7:00 p.m. They looked at their notes and then in the computer in the room and said, “We don’t have an order for morphine on her schedule.” I told them that she’s supposed to receive it at 7:00 a.m. and 7:00 p.m. by mouth. One of the nurses said she would go check the doctor’s orders to see if he stopped it. A few minutes later she returned and said that the doctor had deceased the order for the morphine the night before. This was something that he did not mention to us. The nurse then told us that she still had a standing order for the liquid lortab, but that it was ‘as needed’ and they couldn’t administer it until she asked for it. Grandma was a little out of it and when the nurses left the room, we told her what was going on and told her that she didn’t have any pain medication in her system at that point. She called the nurse and said she was in pain and said she was around a 5 on the scale of 10. Since Grandma never complains, I had an idea that she was probably in more pain than that. Robyn found the example of the scale in the guest book in the room and I decided the next time Grandma was asking for pain meds that I would show her the chart again. As expected, she said she was more like a 7, which is ‘severe’ pain.

11:00 p.m.
I asked Grandma how she was feeling. She said she was in pain, but that she was doing better. She asked me to stay with her because she didn’t want to be left alone. I told her I wasn’t going to leave.

Wednesday, August 1
Today went by slowly. It was fairly routine. The nurses and techs came in and out with the shifts. Rick called and talked to Grandma for a few minutes. She had to request the lortab twice throughout the day. Each time she did, her pain was at a level 7. The lortab seemed to help, but only for a very short period of time. She wasn’t able to eat very well due to the pain.

7:00 p.m.
Dr. Ballou came in to see Grandma as Robyn arrived with dinner. He did a quick rundown of her progress and where she stood in relation to the ‘goals’ he set for her. He said that her potassium level was a little low and they were giving her some to help replenish it. They were continuing with the nutritional supplement and IV saline through the PICC line. We told him she had pain and that the lortab wasn’t helping enough to allow her to eat. He prescribed time-released oxycontin for her. He then told us that he thought he would probably be able to release her by Monday – maybe the weekend, but most probably Monday. It was a little disheartening to receive that news since we hoped for a Friday release. But, again, he wants her to be eating 1,000-1,500 calories a day on her own without nutritional supplement and right now, she just isn’t able to do it.

8:45 p.m.
The nurse came in to change Grandma’s nutritional supplement bag and administer her evening medications including the oxycontin.

9:20 p.m.
Grandma started groaning and wiping her forehead. I asked her if she was sweating and if she felt nauseated. She said, “Yes.” Then she said she needed to go to the bathroom. We called the tech in and she took Grandma to the bathroom. After Grandma was situated, we heard her start gagging like she did at home before we brought her to the hospital. The tech went to get the nurse for assistance and I checked on Grandma. She was sitting on the toilet and using the bedpan from the bedside toilet to vomit into. The nurse came back in and she and the tech helped Grandma back into bed. Another tech brought in a cup of Sierra Mist for Grandma to sip on and the nurse said she would give her some phenergan by IV to help with the nausea.

10:20 p.m.
Grandma is settling into bed and starting to fall asleep. I hope she is able to rest tonight since she’s had a rough couple of days. I also hope that the oxycontin does not continue to have this kind of effect on her.

Past Two Days

I’ve not had a chance to post in the past two days so let’s get started.

My Aunt Linda came to visit Grandma on Wednesday. She brought some coconut water, which we’ve heard is good for recovering cancer patients and lots of baby food. Grandma was sleeping when Linda arrived so I went to wake her up. Once she got moving, we went to the living room so the two of them could visit. Linda and Grandma talked for a while until it was time for Grandma’s medicine. She took it and then about 45 minutes later, she ate about a half of a bowl of soup.

While Grandma and Linda were talking, Grandma started to fall asleep. The medication she is on is making her very tired. Linda talked to Grandma for about 30 minutes more before deciding Grandma needed to rest. When Grandma headed to bed, Linda told me she would come sit with Grandma if Robyn and I needed a break.

Later that day, we received a phone call from Pam at the Cancer Center. The doctor had decided that Grandma needed a higher grade of pain medication. I went to pick up the prescription from the Cancer Center and then had it filled at Walgreens. It ended up being morphine tablets that are time-released. She is to get one every 12 hours. I gave Grandma one around 4:30 PM. She rested quite well that night, but at 4 AM on Thursday, she woke up in a lot of pain. I gave her the scheduled dose of her morphine tablets because at that point it had been 12 hours.

At 10 AM it was time for Grandma’s normal meds. She was able to use the rinse and take the pills but, when it came time for the liquid Q-tussin (the Mucinex), Grandma started to say, “No, no don’t make me take that.” I apologized to her, but reminded her that she needed it to break up the mucus. I turned around to pour her a glass of tea. From the corner of my eye, I saw Grandma falling out of her chair. It sort of looked like she was trying to slip out of the room before I had a chance to turn around with tea mixed with the Q-tussin. I immediately went to see if she was ok. I asked if she was trying to get away before I could bring her the medicine. She smiled and said that her slipper caused her to fall when she was getting out of the chair. I then told her she does not need to sit at the bar stools anymore.

I helped her over to the kitchen table chairs and brought her the tea mixed with the Q-tussin. I told her to sip on it and went to grab the some stuff to clean her knee off and put some cream on it to help keep it from getting infected.

It took 55 minutes to get through her 10 AM meds. On average, it usually takes about 20-30 minutes. This was the longest it’s ever taken.

After helping Grandma back to her bedroom, it was time to check all of her meds and see what ones needed refills before her doctor’s appointment with Dr. Fraizer at 2:15 PM.

Grandma got up an hour later wanting to take a bath before her appointment. I helped her into the tub and stood outside of the bathroom until she was finished washing. I helped her out of the tub and back to her room. Once she dried off and got dressed, it was time to eat some soup. She started her 2 PM meds 30 minutes early so she would have them in her system while we were at the doctor’s office. She did a very good job getting the meds down. She got done just in time to for us to leave. We got to the doctors office sat in the lobby for five minutes before being taken into the room to see the doctor. Pam, one of the nurses, came into the room and talked to Grandma. She wanted to know how the visit to the hospital went when Grandma got her two units of blood. I explained to her what had all happened there and then we talked about how Grandma was doing. Grandma was doing well on her weight even though she had lost a bit since her last visit, she was holding steady at 122.0 pounds. She has not gained but she had not lost. We were told by both the Pam and the Dr. Fraizer that she needs to try to drink two boosts per day and get more food down.  Dr. Fraizer also told us that he wanted Grandma to start rinsing more. She has only been doing it 3 times per day. He wants her to increase that to 6-8 times per day. Grandma’s mouth is in pretty bad shape. She has pretty bad blisters all over her tongue. He ordered a fungus medication, which Grandma had already been on, but he told us that once she ran out the first time to hold off on refilling it until he instructed us to.  Dr. Fraizer told Grandma to keep up the good work and said he would see her next week. We then went next door to the chemo side of the building where Grandma saw Dr. Ballou.

I checked Grandma in and a few minutes later she was taken into a small room off of the lobby there they do blood work. When she finished, I handed the paper work back to the woman at the counter. We sat in the lobby for an extended period of time. I could see Grandma was getting restless and just wanted to go home. About the time she said, “Where is he? Why is this taking so long?” the door opened and her name was called. I was a bit surprised they did not check her weight. They told us to head to the room to the left. Once Grandma got seated, the nurse checked Grandma’s blood pressure. She asked if any medications had changed and how much she was eating. Dr. Ballou came in and talked to her for a few minutes. He asked her how she was feeling and said that if her blood pressure would have dropped before 20% when standing up, she would be finishing her recovery in the hospital. He then said, “It’s not dropping. So she is still well enough to stay at home. “ He said he would like to see her try to eat some sort of solid food by next week. He told her that she was doing well and said I was doing good by keeping her on track. Both doctors told me to continue to push her to eat. “When she says she is finished eating, tell her to take a bit more.”  We discussed how even the baby food Linda brought over was burning Grandma’s mouth and throat. They both suggested finding something that works and stocking up on it. So, as much as she may not like it, mushroom and potato soup it is.

Today is Friday and so far Grandma is doing very well. She is currently sitting at the kitchen table eating a full bowl of soup. I hope she keeps it up.

To help others

Today was unlike anything we’ve experienced before since Grandma was diagnosed. Grandma and I left the house this morning for the Infusion Center at St. Mary’s. Grandma was going to be given two units of blood. When we arrived, we checked in and were told that Grandma had a room with a recliner. We both paused and Grandma said, “I wanted to have a bed. We were told I was going to have a bed.” The woman at the desk said, “Well, we have a room with a bed, but it needs to be cleaned. We can just start you in the recliner and you can move to the bed later if you want.” Grandma and I started down the hall to her bed-less room knowing full well that she wouldn’t have a bed during her visit.

When we reached the room, the nurse, Barbara, got Grandma seated and then started her IV. She stuck Grandma twice in one arm without hitting a vein and then moved to the other arm where she finally got it right. At this point, she administered some Benadryl via IV and asked us about Tylenol. She said there was a pill and a liquid form. I spoke up on Grandma’s behalf and said, “The liquid versions of medicine burn her mouth. If there is a pill version, we should probably try that.” The nurse blinked at me before turning to Grandma saying, “You probably want the liquid form, don’t you?” Grandma nodded and told me this evening that at that point she just wanted to get things moving. She didn’t realize that it meant she would be burning her mouth with another liquid medicine. The nurse came into the room with the liquid Tylenol and again I said, “Ma’am, she would do much better with a pill form. Liquid forms of medicine are very irritating and uncomfortable for her to take. Can we please try the pill form?” To which she replied, “This is Tylenol, Sir. It’s meant to soothe, not cause pain.” She handed the small cup to Grandma. Grandma took it and then proceeded to start coughing and gagging saying, “It burns! It burns!”

Shortly after that, Barbara asked what medications Grandma was on. I started listing them off and she said, “I don’t have a photographic memory. Here, write them down.” She shoved the chart at me and motioned with a pen for me to start writing. I pulled up the list I had of Grandma’s medications on my phone and copied them over to the chart even though I was pretty sure that was something the nurse should have done. When I was done, I handed the chart back to the nurse and she looked over the list.

“OraMagic? Don’t you mean, Mary’s Magic?” she asked.
“No, ma’am. The Cancer Center told us about both Mary’s Magic and OraMagic, but we chose to go with OraMagic.”
“No, you’re wrong. It’s Mary’s Magic.”
“No. I’m not. It’s OraMagic.”
“Well, why don’t you just go get the medications.” So, I texted Robyn and asked her to bring them up to the hospital when she took her lunch break from work. Then, Barbara asked me if I wanted to turn my chair around to watch the TV. “No. I don’t really want to watch TV right now.”
“Are you sure? You can turn your chair around to watch TV.”
“I’m sure. I’m good.”
“You’re good? I’m good. We’re all good.”

By this time the disdain was just oozing from her voice. She was condescending and argumentative and I got the distinct impression that she was doing things the opposite way I was suggesting simply to be difficult. I was so aggravated and it was around this time that I noticed Grandma had started squirming in her seat much like she did at the Cancer Center. Luckily, Robyn walked through the door with Grandma’s medicine in hand. I pulled out the Xanax and gave one to Grandma. The Charge Nurse came in to check on Grandma at that time and Robyn started talking to her about how Grandma normally takes her medicine, much like I did with Barbara when we first arrived. Suddenly, Barbara turned around to face Robyn and said, “Who are you? You must be Nick’s mom.” To which Robyn calmly replied, “No, I’m his girlfriend,” then she continued her conversation with the charge nurse. Eventually she said, “I thought Charlotte was supposed to be in a room with a bed.” Barbara jumped into the conversation and said, “We’ve already been over that. Charlotte chose a recliner over a bed.” I shot Robyn a look and she replied with one of her own that said, “I know she’s not telling the truth.”

I continued giving Grandma her regular medications. When I got to giving her the liquid Loritab, the charge nurse said, “Oh, don’t give her that just yet.”
“Why?”
“Because we are going to give her morphine by IV.” Barbara had called Dr. Ballou about Grandma saying she was in a lot of pain and needed something stronger than what she was currently on. Dr. Ballou prescribed it on the word of the nurse. Grandma didn’t even have a chance to decline it. They hadn’t consulted with her about anything she wanted.

Not too long after that, Robyn had to head back to work. Barbara hung the first unit of blood and left the room. Every once in a while, she would step in to check Grandma’s vitals and document any changes on the chart, but she didn’t speak a word until her shift was over and she was letting us know that she was off work and someone else would be checking in on us. While Grandma was receiving her second unit of blood, I received a phone call from Dr. Fraizer’s office at the Cancer Center. Robin, the front desk attendant called and sounded somewhat frantic.

“Is Charlotte alright? We got a call saying she needed stronger pain medication and that she was in BAD shape.”
“Well, we’re here at the Infusion Center getting her blood transfusion, but she’s resting comfortably right now. Who told you she was in ‘bad’ shape?”
“One of the nurses there. She said that Charlotte was in a lot of pain, not able to get her pills down and she wasn’t sure how we allowed her to get so bad. Dr. Frazier is out checking on a patient at Deaconness, but you could meet him if you want the new prescription now.”
“I don’t think that is necessary today. She is tolerating her pain meds well. Yes, she’s in pain, but she is able to get her pills down.”
“Oh. Well, I thought it was strange that they were calling. And since I knew you have taken care of her medications since the beginning of her treatments, I wanted to call you first. We can take a look at Charlotte when you are here on Thursday.” The Cancer Center staff has been wonderful. They are caring and attentive and Robin sounded frightened for Grandma’s well-being. After the day we were having, it was nice to have the reassurance that the Cancer Center staff thought I was doing a good job as her caregiver.

Around 5:oo p.m., Robyn arrived. We sat for a few minutes when the medical assistant walked in to start Grandma’s discharge process. She disconnected Grandma from her IV and then said, “In about 20 minutes, I’m going to come back to check your vitals and then, you’ll be on your way.” Grandma immediately started shifting in the seat and saying, “Is it time to go?” The medical assistant came back to discharge us and we were on our way home.

Once we got home, I realized they sent us home without any after care instructions and didn’t tell us what to expect  in the 24-48 hours following transfusion. Luckily, I have a couple of friends who have been through it before and Robyn has a friend who is a phlebotomist. So, we used our resources and found out that there are a handful of symptoms that could indicate problems.

We got Grandma settled in at home and I called Linda with medical updates. She said she thought we were treated unfairly. Then, she started asking a lot of questions about why Grandma was getting blood. I asked her if she was reading the website and she responded by saying that she doesn’t visit the site because her daughter says she caught a computer virus when reading it, which isn’t possible because of the precautions I’ve taken when building the site. So, Linda doesn’t visit the site. I feel really disrespected. It seems as though Grandma’s own children aren’t interested in knowing what she is going through day-to-day. After everything we’ve been through, all they have to do is visit the site to find out what’s going on with Grandma. It’s here for them and tonight, I found out that they are not only not visiting it, but that they are also telling other people that they will catch a virus if they visit the site. When I started this site, I started it for two main reasons. #1 to document her journey for her kids to be able to keep up with all her doctor’s visits and daily activities and #2 for other people going through this process. I thought that perhaps something we experience might be able to help others down the road.

Needing Blood

I was truly hoping with Grandma’s last treatment on the 20th, that would be the last time I would need to write in this journal. I was hoping my grandmother would be on the road to recovery and there would no longer be a need to write.

When the doctors say the two weeks after treatment is the hardest of them all, they are so right. Grandma was not able to keep any food down over the weekend. She also had trouble getting and keeping most of her meds down. She actually didn’t do much other than vomiting and sleeping.

Today, she had an appointment with the chemo doctor at the cancer center at 1:45 p.m. I had a tough time getting her ready because she had it in her mind that she was too sick to go and wanted me to cancel the appointment for her. After getting her to understand that she really needed to be seen, we got to the office a few minutes late, but ended up sitting in the lobby for almost an hour and 30 minutes before the doctor walked through. He asked if Grandma was there for fluids. I said, “No, she has an appointment to see you today.” He looked sort of stunned as if he was unaware of his own schedule. Grandma said, “Take me home. I need to lay down. I can’t sit here anymore.” I walked up to the window and asked the receptionists if it would be possible for us to take Grandma back to lay in the patient bed because she was feeling very ill. They said that would be no problem and took her back to the nurses stations where they have a bed.

Right when we arrived at the Cancer Center, one of the nurses took some blood to check Grandma’s levels. Once Grandma was resting in the nurse station bed, one of the nurses came over and said that Grandma was dehydrated and that her red and white blood cell counts were both low. With her white blood cell count being low, she is much more prone to infection. They gave her a shot to help her from getting an infection and hooked her up to the IV for fluids. Then, they scheduled her to go to the hospital at 9:00 a.m. tomorrow (Tuesday) for a blood transfusion. They said she would need a few unites of blood and that she might start feeling better after she receives it. Right now, she has no energy. All she can do is lay down and it takes everything out of her just to sit up long enough to take her meds.

At 4:50 p.m., Grandma was just about done with her fluids. The staff at the Cancer Center gave me some paper work to take to the hospital so they know what is being requested. I met up with Robyn at home and we took Grandma to the hospital this evening for them to match her blood type for her morning transfusion. We checked in at the front desk and waited for a bit in the outpatient waiting room. Grandma rolled herself back and forth in the hospital wheelchair while we waited.

They called her back to have her blood drawn. They asked her date of birth, name and other personal information. Then they took her blood. He asked if we knew what time we were scheduled at the hospital. I told them 9:00 a.m. and then the phlebotomist said he was done. Even though he won’t be the one who sees her tomorrow, he was very nice and drew the blood from Grandma without making her jump.

She is laying in bed right now resting. I am contemplating whether or not to wake her for her pain meds. The doctor told us from the beginning that if she was sleeping, not to wake her for medicine, including pain meds. So, I may just let her rest for now.

The reason I waited so long to write this entry today was because I wasn’t sure if writing past Grandma finishing radiation treatment was something I should do. After seeing how hard today has been for her, I realize her journey is not over yet. I will continue to document her recovery. Each day for the next two weeks will be hard for her, but we are told after that things should start to improve. I’ve been told today by a few people that they are praying for Grandma. I might not have had time to thank them so I want to do it now. Thank you for your thoughts. Grandma needs them all right now. I appreciate all your prayers. Thank you.

Congratulations

The name says it all, but before we can get to the good news, we need to finish with the beginning of the day.

This morning, Grandma was up and completely ready to go to the Cancer Center at 7 AM. When I walked passed the bathroom, I could see Grandma did not quite seem like her self. She followed me down the hall and grabbed her oxygen tank turning the knobs trying to get it set to the correct setting. I asked her what she was doing, but she kept fooling with the air tank without answering me. I took the tank from her and turned it on. I asked her to eat a pudding before we went because see needed something in her belly. She started to eat the pudding and was very shaky. I thought for sure today was going to be rough on her since she already seemed ‘out of it’ this early.

She could not eat the whole pudding cup so I tossed it in the trash and had her sit in the living room. She was out of breath. I wanted to make sure she calmed down before driving over to the Cancer Center. Within two minutes, she fell asleep. I knew we were going to be late, but at this point she needed to sit and relax for a minute.

Last night, I went to the midnight showing of Batman. So, today, I was extremely tired. I thought today was going to go by quickly because Grandma was only scheduled to have her radiation this morning and this afternoon. We would have just done her treatment and we would have headed back home. I knew as soon as I saw her behavior this morning, that today was going to be long. I went to wake Robyn up because I wanted to let her know that I was almost sure we would have to stay at the Cancer Center today for Grandma to get fluids.

I packed my laptop, woke Grandma up slowly and helped her to the car. The extra 15 minutes I give her to sleep seemed to help out because when we arrived at the Cancer Center, she was alert and not so ‘off.’

Pam, the nurse, came out to talk to us. I told her how Grandma was acting this morning and that I thought she might need fluids. She walked over to the side of the building that handles chemo to let them know that after Grandma finished with this morning’s treatment, she would need to go next door for extra fluids. Pam then told me the female doctor who comes in the morning to supervise treatments, had not shown up and that Grandma’s 7:15 AM appointment would have to wait till she arrived. She also told us because of this Grandma’s 1:30 PM appointment would be moved back to 3:30 PM to compensate the time difference.

Fifteen minutes or so later, they took Grandma back and started today’s radiation. While she was back, Pam told me again how Grandma is a really strong lady and that she wishes more people would be like her.

 

Grandma came out a few minutes later and I walked her next door to have fluids pumped in her.

When walking in the lady at the counter who is always very nice to us did not notice Grandma for a minute. When she saw us standing there, it looked like she almost fell over in shock. I guess we sort of startled her. She handed us some paperwork that we normally get when Grandma gets chemo. It turns out even though Grandma was not getting chemo today, they still wanted to run labs on her because she was not really her self this morning.

They did the blood work, but before she could start the fluids we had to wait to see what her levels were. About 20 minutes later, they checked Grandma’s weight. It was 121.0. We walked into the infusion room and took a seat. Grandma closed her eyes and started to rest. That’s when one of the nurses came over and started the IV. She said, “I heard this might be your last day. Just remember if you need fluids, just come in cause the next two weeks will be tough.” After getting the IV started, she told Grandma she had to leave and would not be here when Grandma got done so she wished her the best.

I stayed awake until I saw Grandma go to sleep. Then I closed my eyes from being so tired. Around 10:00 AM rolls around and I feel a tap on my foot. Robyn came to the Cancer Center to check on us because I wasn’t answering any texts. She wanted to make sure Grandma was doing ok and thought it would be good to get my medicine to me as well.

I took my meds then looked up to see where Grandmas IV was. “It looks like we have only have about ten minutes left,” I said to Robyn. Grandma’s IV was about a quarter full.

I talked to Robyn for a few minutes before Grandma woke up. She kept her arm straight the whole time even though she was sleeping. A nurse came over to tell Grandma she was done.  She also wanted to give Grandma a hug and tell her how happy she was for her. She reassured Grandma that if she needed anything, to just come get her. Grandma seems to have that effect on people. We walked back to the car and headed home.

Grandma had something small to eat then laid down. I got her up at 2:00 PM for her meds. Once she got done taking them, I told her to rest and that I would get her up in time for her afternoon appointment. I thought she needed to be back at 3:30 PM, but Grandma told me, it was 3:15 PM. So around 2:45 PM, I gave her the Xanax and we headed back to the Cancer Center.

Grandma, Robyn and I arrived and they took Grandma straight back before even had a chance to sit down. I had some work to do so I started on it, but before I could hit send on the invoice, Pam was telling us to come in to the exam room. Grandma was finished and needed to check out.

That’s when she hand Grandma a Certificate of Completion signed by everyone at the Cancer Center who worked on her case. Grandma’s eyes lit up. She then handed us Grandma’s discharge papers and started to explain how the next two weeks would be harder then treatment because all of this will be leaving her system. She said that next week, Grandma will need to come back on Thursday to see the doctor for a checkup. She then told Grandma how much she admired her and said the doctor would be in to see her in a few minutes. I spoke up and asked where Grandma’s mask was because they have been saying that’s something Grandma would be able to take home from the beginning. She had Stephanie go grab Grandma’s mask. If nothing else, this mask will be a good reminder of what Grandma had to go though.

I plan on getting a frame tonight for Grandma’s certificate then hanging it with the mask where ever Grandma would like it.

When Doctor Taylor came in, he basically went back over what Pam had told us Then said to try to just take it easy and don’t forget to keep her meds on schedule. He congratulated Grandma and said that doctor Frazier would see her next week. Then she said her goodbyes to a few of the staff and we were on our way back home.

Today is a great day. From what we all understand, the cancer should be gone, but they plan on keeping a close eye on it to make sure Grandma stays cancer free. Each week for the next month, Grandma will go into see a doctor at the Cancer Center for checkups.  In about a month, they will do a CT scan to check the tumor from the inside. I plan on continuing to write in this blog about each visit and if throughout the week something happens that needs to be documented, I will write about that, too. The doctor and nurses say that this next two weeks will be grueling for Grandma so I plan on documenting that as well. As Grandma said her goodbyes to people at the Cancer Center, she seemed like a new person from who she was this morning. It’s now 7:16 PM. Grandma rested from the time we got home till about 30 minutes ago. She takes her meds tonight at 10:00 PM. We are all very proud of her and pray that nothing else comes up. She did great and deserves to enjoy life without having to go through all this.  Grandma has always been there for me when I needed her and I did everything I could possible to return the favor to her. I’m so glad that I’m able to say she successfully completed radiation therapy treatment.

As Fast As Fast Can Be

If today was a race, Grandma would have won. We walked into the Cancer Center and before she could even sit down, Stephanie was at the door calling Grandma back for treatment. I didn’t even bother taking my laptop with me because I knew that by the time I got online and my email open, it would be time to leave. Sure enough I pulled out my phone and checked into four square. Then, went over to Twitter and as the app started to load Grandma was walking right back out the door.

She said, “I have to be back at 7:30 AM and 1:30 PM tomorrow.” I asked how she felt and she said, “Fine.” She also said that tomorrow would be just as quick because they are only hitting one place. From what I understand, Grandma will also see the doctor tomorrow for a checkup after the second radiation treatment for the day.

She has dropped in weight to 123.2 pounds. That’s not good. She was 129.0 on Tuesday. I don’t think the doctor will be too happy about that tomorrow.

Not the last

Last week, Grandma and I thought today was going to be her last day doing radiation treatments. When we walked into the Cancer Center today, Grandma sat down and waited for ten minutes before Stephanie came to grab her from the lobby. As she was walking towards the back, she asked Stephanie, “Did you hear that today is not my last day after all?” She replied, “I heard.” The doctor said that sometimes they have to tack a few days on to treatments to make sure the knot is gone, but when they do this, they don’t go all the way around. They just target the one spot. The point is that today seemed very quick. So I’m assuming that’s what happened today. Just the one spot was targeted. Grandma has one treatment tomorrow and two on Friday. She will meet with the doctor on Friday to see if he thinks she will need to add next week as well.

I mentioned yesterday that her weight was up to 129. Well, today it’s down to 126, but Grandma did not have IV Fluids yesterday or today. We noticed that she had a quick increase of weight last week when they started giving her extra fluids and we believe that the fluctuation this week is because she is not getting them.

Come back till Friday

Today, Grandma thought she was only two appointments away from being finished with her cancer treatments. We found out after she had her radiation therapy that the doctor could still feel a marble sized-knot under her skin. He wants her to keep doing treatments until at least till Friday. At that point, they will recheck it. He thinks she should be done by then.

Even though Grandma isn’t too happy about going to treatments for two more days, the doctor told her she is doing wonderful and that most people who keep a good attitude about beating the cancer rather than sitting at home saying, “Woe is me,” have a much easier time with the treatments. He also said that having someone at her side, making sure she is doing and getting what she needs and taking care of her is what has allowed her to be able to handle this so well.He thanked me and said she was lucky to have me there to help her.

After the appointment we came home. Grandma seemed a bit sad about it not ending tomorrow, but I told her it could be a lot worse than two more days of treatments. I will get her prescription filled tomorrow. She was supposed to be getting her haircut tomorrow, but because her appointment is at 1:30 p.m., she needs to reschedule it with Linda. I reminded her to give Linda a call when we got home at 4:00 p.m.

Aside from having two more treatment days, Grandma really is doing well. She is disappointed about rescheduling her hair appointment, but her weight is up and she made the doctor laugh, which has been her goal at every appointment – he doesn’t smile much.

We are all hanging in there. Grandma’s body is fighting the cancer and we are the support for her. Robyn and I make sure she is eating, taking her medicine on schedule and here for her to lean on. I get her to all her appointments and am glad to be able to give something back to her. It is trying at times. Fighting cancer is stressful for all those involved, but as long as she pulls through, that’s the most important thing.

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