June — 2015
Tuesday, June 2nd, was probably the worst day for Connie so far. She was not feeling well so, I did Meals on Wheels with Lizzie and then I had a dental appointment at 3. I felt bad that she was alone so much that day. Tuesday, evening, she had to drink the solution for the colonoscopy scheduled for about 7:30 the next morning. We started at 6 and she was struggling to keep it down. But she was around 7:30 there was no reaction at all, and I was worried, so I called the doctor. He told me to go to CVS and buy some 2 enemas and give them to her. I did and Connie was so embarrassed that I had to do that. The first one worked a little bit and we did the second one. It too worked some. The doctor told us to keep trying and rescheduled us for 8:30. I think we finally got to bed after 11 and had to get up at 3:30 to start more prep at that time. I have never seen Connie so miserable. We were completely exhausted when we left for the doctor that morning not knowing the worst was still to come. Thinking about that night will always bring tears to my eyes because I know how much she suffered that night and the next day.
Hi Mary,
Connie is preparing for a colonoscopy tomorrow, but she wanted me to write to you and thank you for all the emails, cards, and flowers you have sent. They truly lift her spirits. I am going to try to make the healing mass for Connie tomorrow, but it depends on what time we get back from the doctor. Thanks for being there for us!!!
Connie and Sparkie
At a little, after 3 in the morning, we got up to do more of Connie’s prep. It was so hard on her. The email below is a description of what happened that day. Afterward, Connie and I viewed it as a miracle that we had not lost her that day. It was extremely hard on Connie and I left there crying as I realized how close I came to losing her then and then knowing things were probably even worse than we thought.
Dear Friends,
I ask you to continue to pray for Connie. She was scheduled to have a colonoscopy this morning, but things did not go as planned. She had a terrible time with the prep and after many hours on the phone with the Dr., she accomplished the first part around 11 pm last night. She then had to get up at 3:30 to start the 2nd phase of the prep. This was extremely hard for her as she has trouble keeping food or liquids down.
When the DR. start the procedure, Connie did not handle the anesthesia very well and started throwing up which cause some serious concerns that they had to take care of. Then the doctor found there was something outside the colon and rectum that was pressing against the rectum which did not allow him to get up there with an adult instrument. He was able to look a little bit with a child’s instrument but not very far.
For a while, they thought about admitting her to the hospital because of her reaction to the medicine and some of the medicine went down the wrong pipe. Eventually, after about 5 hours I was able to bring her home but am keeping a close eye on her for chills and a fever. If those develop, they will admit her to the hospital. So far so good on that front.
The bottom line this procedure did not eliminate or confirm where the cancer was coming from but uncovered a new problem (that of something pressing up against the rectum). The doctor did not have any good news to offer only bad. It was a very discouraging outcome.
We will see the oncologist on Friday (I hope) and see where we go from here. Please keep her in your prayers as she is struggling right now with all that is happening both physically and mentally. Please pray for me also. Pray that Connie can get some relief and that she can turn this around and conquer it.
Thank you so much
Joel (Sparkie) & Connie
After we got home that day, we were both exhausted and worried with fear about what was going to come. At this point, Connie could barely eat, and the doctor and nurses kept telling me I had to try to get her to eat. But with everything she ate, it seemed like she would throw it up. I had been to smoothie places where they would make them with a lot of calories, I tried all kinds of fattening things just to get calories in her but I could just see the weight dropping off of her almost daily and it was so hard. We spent the rest of Wednesday and Thursday worrying.
On Friday, June 5th, we had a doctor’s appointment with Dr. Connor, and we did not know what was going to happen since they were unable to do the colonoscopy. We wanted to get started on the chemo but were afraid he was going to order more tests. Thank goodness our friend Lizzie, came with us o most of the appointments as Connie and I were both upset, and it was good to have a third person to help us remember what he told us. Our appointment was at 10:45 and we had the 8:30 mass said that day for Connie’s healing. We were surprised because Connie said I do not think I can do any more tests. Dr. Connor told her she did not have to because even though the colonoscopy was unsuccessful it told him the chemo that she needed. Below is the email I sent out after that visit.
Connie saw the oncologist this morning and will be starting chemo on Tuesday. The Dr. said that even though the colonoscopy was not successful it gave him more information to work with. They think the colon is generating cancer in her abdomen. We are happy after all this she is finally getting to start chemo.
The Dr. indicated that this was a very aggressive cancer and that she will be on chemo for a long time. Even if they are able to eliminate it, there is a good possibility of it coming back. He said to plan on even if it goes away, she will have to be watched very closely for its return.
While the Dr. was very encouraging that this chemo would be effective, we will not know until she has been on it for a while.
Connie wants to thank each of you for your prayers and concerns. She reads your messages and emails but as she gets tired very easily, it is hard for her to respond to them.
Please keep her in your prayers and her Dr. as well. We are praying the chemo will work and that she can get to feeling better soon.
Thanks to all of you. We both appreciate your prayers.
Connie & Joel (Sparkie)
On Tuesday, June 9th, we finally started chemo. We were so glad to get started and had such high hope. We got there about 8:30 and did not leave until around 1:30. Lizzie had asked to come with us but she had been doing so much, that we did not want her to just have to sit there for all those hours. In hindsight, I wish we had because they told us so much stuff. Connie was in no shape to remember and I was struggling to remember everything they told me. We came home and she just collapsed the rest of the day. Here is what I wrote to one of the ladies asking about Connie, that afternoon.
Thanks, Trish,
It was a very tough weekend. Connie has not been able to keep any food down since last Friday. She started chemo today and they gave her an IV.
Joel
On Thursday, June 11th, we went in around 10 to have her chemo removed. She had been wearing it for the last 48 hours. Everything went smoothly and she was exhausted, so I took her home to rest. We had already canceled our Trivia night reservation as we were going to a class on the chemo she was getting. Unfortunately, Connie was just not up to going. So, I called Lizzie and she went with me. The class was particularly good as they told us what to expect during the chemo. We were told with the chemo Connie was getting that she may or may not lose her hair. Below is the email, I sent to people on Thursday afternoon after having gotten back from getting the pump removed.
Dear Friends,
Connie started chemo on Tuesday, she had about a 3-hour chemo treatment and then had to wear a pump that pumped more chemo into her for a couple of days. We just had it disconnected a little while ago. As long as we can keep her blood counts where they need to be, she will do this every other week.
She had a rough weekend with nausea and some pain. If she was able to eat a little bit, she was not able to keep it down. She has done a little better in the last couple of days. She is starting out having already lost a lot of weight and being nauseous before we even started the chemo, so we are expecting a pretty tough time once she gets further into the chemo treatment plan.
One good thing it appears we can go back in and get her hydrated and some nausea medicine through her port even if she is not scheduled for a chemo treatment. I am still verifying the process for doing that.
She is weak and is sleeping and resting a lot.
Please continue to pray for her as I suspect we still got a rough time ahead of us.
Thank you so much for your continued prayers.
Joel (Sparkie) & Connie
I have no idea, why I remember what we did on Sunday the 14th, but I do. Connie had not eaten anything much in the last week and after mass, I think I brought her an iced coffee from McDonald’s, which she was unable to drink. But that afternoon around 1:30 Connie wanted to get out a little bit. She wanted to go to CVS as they had toilet paper on sale. We went to the one on the main street and they were sold out. We decided to go to a new one on Exchange and Alma. On the way, I stop at Einstein bagels which had just opened in Allen and bought some bagels. Then we continued to the next CVS store. Connie was able to get out of the car and we went in and got the toilet paper. That adventure took a lot out of her as she had not been eating. We had scheduled her to go in for hydration on Monday, so I knew she needed to rest. It is so hard seeing your loved ones suffer.
Monday, morning the 15th of June I went to McDonald’s around 8:30 at brought you some hotcakes. I was hoping she could eat but she took one bite and that was it. You were feeling so bad and you had hardly eaten anything in a week. I called Dr. Connor’s office and here is the email I sent out after talking to them.
Hi Guys,
I am taking Connie in this morning. I called the Dr. and they want to do some X-rays and some blood tests. She is not keeping anything down for over a week and they are concerned. Please pray that the test will be good and will give her some relief.
Joel
We got to the doctor’s office around 11:30 as that is when they told us to come. This part I am not sure about this, but I think this was the day you were sitting there and feeling terrible. This lady kept trying to talk to you and your head was slumped down because you felt so bad and I know you and I both wished the lady would just stop. I cannot even remember if we got hydration that day or not. I remember that by 1:30 they sent us to the emergency room. The emergency room doctor we had looked just like Lindsey. They then ran some tests to see if things were going through your system, but your bowels were blocked. Finally, around 5 they decided that they were going to admit you. There were no rooms available, so they put you in a staging area outside the emergency room until a room was available on the cancer floor. We were there until about 8:30 a little later. I remember you asked for something to eat and they brought you some soup. You did not keep it down too long as you had not been able to keep anything down for days. After we got to the room, they put this thing through your nose into your stomach to pull out all the bile that had collected there. I know that must have been painful. I finally left a little after 10 and cried all the way home. It broke my heart that you could not eat, and I thought you might never eat again. I do not think I slept at all that night because I did not see how you were going to make it as you were so sick.
On Tuesday, the 16th, I got up early and was at the hospital a little after 7 AM. You were awake and I noticed how much better you looked and how much better you were feeling. Your eyes had the sparkle back in them. The tube down your nose was emptying into a big plastic container I am not sure how big it was, but it looked like it may have held about 32 oz or even more. It was almost full, and you told me they had already emptied it twice because it got full. It would be a couple of days before it would slow down. It may my heart jump with joy to see you feeling better and acting like your normal self. Little did I realize at the time that there were going to be so many ups and downs during your 16-day stay in the hospital. You even told me that this is where you needed to be today. We were not sure what they were going to do as Dr. Connor and Dr. London were consulting. It would be tomorrow before we talked to Dr. London. This day was a good one in that you were feeling better, but they still would not let you have anything but ice chips not even a drink of water. A dietitian came in to talk about her blood work and what they could do for her. The doctor had ordered that she go on TPN (Total parenteral nutrition) which is a method of feeding that bypasses the gastrointestinal tract. The dietitians would come by every day or so and they would look at her blood work to determine what nutrition they needed to put in or adjust to her TPN. I am not sure but for a few days, I think they gave it to her continuously over 24 hours. Eventually, they would cut it back so she would receive it overnight for 12 hours. Little did we know how long this was going to last. If I remember correctly Lizzie came by that day and every day except for the weekends. Oh, Connie, I cannot hold back the tears today writing this as I am so lonely without you. Below is the email, I sent once I got home that night
Dear Friends.
Connie is in the hospital NO VISITOR PLEASE!! She needs to regain her strength, so we are asking at this time that she has no visitors.
After seeing the doctor yesterday and getting her some hydration we went to the emergency room around 1:30 yesterday. After running some tests, they decided to admit her at about 5 pm. By the time she got a room and they were able to start some treatment it was after 10 pm. So, I go home late last night and left early this morning, so this is the first time I have had to write.
They determined that the reason she cannot keep food down is because it kept backing up into her stomach from the small intestine. They are presently draining her stomach through a tube and hoping they will be able to get her small bowels to function better.
We have several doctors that we are interfacing with. The hospital doctor who hopes and thinks this procedure will work, a surgeon who is not as sure this will work, and our oncologist. This procedure may last for several days we are not sure.
If it does not, we are unsure about the next step, which it is my understanding that the oncologist and the surgeon will decide what to do next
Please pray that this procedure will work it is the best one as it would allow her to start eating again and to continue her chemo treatments.
They will start giving her nourishment tonight through an I V or her port. The dietician came to talk to us and based on her blood work, etc., the pharmacy will make a special bag of nourishment for her.
Thanks
Joel (Sparkie)
On Wednesday, the 17th, I got to the hospital early and Dr. Connor came by, and still was not sure what they were going to do. Connie was not feeling as well as she had been on Tuesday but much better than she had for the last couple of weeks. The amount of bile being pumped from her stomach and intensities had slowed down and it was taking 15 hours or so before they had to empty it. Around lunchtime, Dr. London, who had done your exploratory surgery, stop by and we had a big discussion with him. He felt and had told Dr. Connor that he did not think surgery was advisable based on the fact that the cancer was in the lining of the omentum and was not sure that trying to remove something they were not sure about was there was not worth the risk. There were several reasons and I do not remember them all. We discussed maybe doing a colonoscopy bag, but he was big on that proposal but would think more about it. He was not encouraging but for some reason Connie and I really liked him, and he was always upfront and blunt with us. Even though he was that way, he had a manner of delivering it that you knew he had compassion for you. After the doctors had left Connie talked to me about changing her will. Since we did not know what was going to happen, I recorded that conversation just in case I needed proof that I was doing what Connie wanted. That afternoon FR. Tim came by to see Connie and gave her a blessing for healing. Our friend Lizzie was there and was so helpful to Connie. Connie was complaining about how uncomfortable the bed was and Lizzie suggested getting an eggshell for the bed, which she said she would look for.
Please continue to pray for her and I think you very much for that.
Our friend Lizzie sent out the following email for a rosary for Connie that afternoon.
Hello,
My name is Liz Brier and I wanted to let everyone know that we are gathering tomorrow, Thursday, June 18 after the 6 pm mass to say the rosary for Connie. Many of you have asked what you could do to help, and we all know the power of prayer, so let’s gather and offer Connie up for Healing.
To those of you who may not be Catholic, we invite you to pray along with us for her healing. If you are unable to physically attend the mass/rosary, if you would offer a prayer on her behalf it would be much appreciated.
We all know the power of prayer and how much our heavenly Father wants us to bring Him our needs.
May God Bless Connie and Sparkie.
Liz Brier
Thursday was just another day at the hospital. I remember we were still unsure of what the treatment was going to be for Connie and I were all on pins and needles. Connie was feeling better and I cannot remember what, but I was supposed to do something at the rosary. I am not sure if that was to thank them or ask them for prayers or what. We had a rather good turnout for the rosary which started around 6:30 pm after the 6 o’clock mass. I talked to several people after the rosary. Dave and Lizzie ask me to go to Pallio to eat but I did not want to. They convinced me to go and I felt so guilty as here I was out eating and talking to friends while she was in the hospital unable to eat. But I know she wanted me to go to the rosary and I am sure she would want me to go out with Dave and Lizzie to eat. Even though she was the one that was sick she was still worried about me.
Friday the 19th was an eventful day for us. I had gotten to the hospital early around 7 AM like I did almost every morning. She had a nurse the night before that she should see one of the surgeons in the hospital and talk to him about having surgery. We talked about it and we’re considering it, even though we had a lot of faith in Dr. London. As we were discussing it, we found out they were going to run a test on Connie to see if her bowel was working yet or not. We were unaware of it until that morning. A little before 8 they came and got here, and I went with her as far as I could. While they were doing the procedure, I went to the chapel to pray and I remember writing a prayer in the book there. I am not sure what I wrote but I know I was begging God to let her stay with me. I sent the following email from my phone at 8:09 that morning.
They are doing a procedure on Connie right now. This will tell them if there is a blockage in her small bowel caused by a tumor or by inflammation. Please pray that it is not caused by a tumor. If not by a tumor the treatment is much better. Connie and I thank you for your prayer.
Sent from my iPhone
The procedure was done, and Connie was back in her room around 10. Now they would be checking to see how fast the fluid would pass through her bowels and it should not have taken more than two or three hours. After having all that fluid put into her Connie, was definitely not feeling well. Lizzie was there with us and sometime around 10:30 Connie looked at me and said Sparkie please let me go and closed her eyes. I call the nurse and they came to check her dramatically low blood pressure. They called the hospital doctor and he came. They were considering transferring her to intensive care, but first, the doctor just took her hand and talked to her peacefully, slowly her blood pressure started to increase, and after a little, while she opened her eyes, but I knew she was not feeling well. Gradually her blood pressure returned to normal. By late afternoon they could tell the stuff they had put in her was barely moving through the bowels. There was some movement but not very much. They then started the pump and the big bottle behind her started feeling up with a lot of stuff they had put in her bowels that morning. It was not a good day for Connie.
On Saturday, the 20th, I arrived at the hospital early as I want to be able to talk to the doctors when they made their rounds. If I correctly remember Dr. Connor did not come by but another doctor from his office did. Later that morning, Dr. London came by and he said the liquid was moving through her bowels extremely slowly. It was not the encouraging news we had hoped for but after the way she felt after the test, it was what we expected. That afternoon the line that had in your nose to your stomach came out and they had to re-insert it. I could tell how painful that was for you. But they got it back in on the first try, as they took x-rays after to make sure it was in the right place.
Sunday and Monday were normal days, as Connie was starting to feel better again after the test on Friday. I know I went to mass that Sunday morning and rushed to the hospital hoping I would catch the doctor on his rounds, but I missed him. I just hung around with Connie and kept praying. I remember on Monday Lizzie, stop by again to see us and Connie was always so happy when she came to visit. On Monday, I left a little before six and went by Whataburger to get something to eat and when I walked in, I ran into Lizzie and Dave. It was good to see them as they were always so caring. What was amazing as we were sitting there, Connie called with some good news. They had let her have one sip of water. Remember Connie had been in the hospital for a full week now and she had barely eaten anything the week before that. All they had let her have was some ice chips every now and then. But that was not all of the good news as they had let her have a bite, just one bite of jello. I do not know how anyone could be so happy or so excited that their wife had taken a sip of water and had a bite of jello. Another good thing happened on Monday and that was the tube from her nose to her stomach came out again and this time they decided not to re-insert it. I know you were thankful as that was so difficult to have in.
Tuesday the 23rd, was a rather good day. We were so excited that you had been able to at least taste something again and that you had made a small poop. You would have thought we had won the lottery. Then Lizzie and Lindsey came by around lunchtime. Lindsey was home from medical school for a week and before they went home, she asked to come by and see you. It made us so happy. We would not see Lizzie but once or twice more while she was here as they were having a good time together. Then we got some news about how they were going to treat you. They had decided the best course of action was to continue chemo, as the other doctors thought that was the best chance of you getting better. Today was supposed to be her scheduled chemo treatment but they wanted to wait another couple of days before they started. They continued to take her blood every day and adjust the TPN to meet her needs.
Connie is improving. The test on Friday was inconclusive but there has been an improvement. Last week one of the doctors was talking about hospice but he is no longer saying that. She still has a long way to go and we continue to ask for your prayers. We feel we have been granted a small miracle to get her this far based on where she was last week. She was allowed to sip water yesterday for the first time and last night she was allowed a bite of jello. They are taking it slow and we hope she can continue to improve and be able to tolerate more liquids
I just want you to know your prayers are working and we greatly appreciate them. She is in a good frame of mind and hopes she can get back on chemo soon as that is what the doctors want.
Please continue to pray for her as they are definitely helping.
Thank you
Joel. (Sparkie) & Connie
Sent from my iPhone
On Friday, the 26th, Connie was tired and resting a lot from the chemo but other than that she was doing ok. I remember because I took off and drove to Plano to get a haircut at 1:30 that afternoon. I think Connie was glad because all she wanted to do was rest. I got back as soon as I could and then left a little earlier that night so she could rest some more.
Saturday again was an ok day, as I could see you were feeling better. I did not know if you were doing better but I could tell you were feeling better. I arrived early on Saturday morning and you were still sleeping, in fact, I sat down and fell asleep until about 8 that morning. The afternoon was a little bit different as I got mad again at the technician. They had come to put a pick line in your arm so you could get the TPN especially when the port was being used to deliver the chemo. It was very painful on you and the lady tried three times and could not get it in. I finally got her to stop and get someone else. They could not get someone until Sunday morning and that was ok with me. I just did not want the lady to keep trying especially after three-time as I know it was painful for you.
Sunday morning, I went to mass and was rushing to get to the hospital in hopes of seeing the doctor. I remember, Dave, Liz, and Lindsey ask me to go to breakfast but I turned them down as I wanted to get to you as soon as possible. Even with going through the McDonald’s drive-through I was there way before 10 but had missed the doctor. The good thing was around 10 they came to try to put the pic in your arm again. This time it was a different lady and I guess because I got so upset the day before this one was more experienced; she got the pick in the arm on the first try. That afternoon you did a lot of walking around the hospital floor that we were on and even though you were not in great shape you were showing a lot of improvement over where you were when you were admitted to the hospital two weeks ago. We knew they would be releasing you soon but were just not sure when.
Monday the 29th should have been a good day for us as Connie was feeling better and we were making plans for her to come home. She was feeling better but still very weak and she was walking around the hospital floor to try to build up her stamina. I was still having to follow her and hold on to her, but she was doing ok for the most part just using the pole that carried all the things they had going into her. The only thing that kind of spoiled it was the night before the nurse told her they were going to release her to palliative care. But we knew that was not true, Mayne a week or ten days ago that would have been true, but we knew what the doctors had planned. The decision by all the doctors was that her best opportunity was to continue with the chemo in the hope that it would work. All her doctors had agreed on that. While she was doing that, we would continue with the TPN until she was able to eat enough food on her own. We did not realize at the time that it would take about five and a half months before she could get off it completely.
Tuesday, June 30th, we were very busy that morning as Connie, was getting ready to be released from the hospital. People were coming by and I was having to handle and sign so much paperwork. They took her blood so they would know what to put in the TPN. That would become almost a weekly thing as they wanted to make sure she was getting the right nourishment. So, they gave me numbers for the people that would be bringing the TPN out that night and showed me how to use it. They also provide me with a number for the home health people that would be coming weekly to draw her blood and do other assessments on her health. It was so much to digest, and my head was spinning.
.
We had been busy all morning taking care of all these details and Connie was so excited to be going home and sleeping in her own bed. A little after 11 Lizzie and Lindsey stopped by as Lizzie was taking Lindsey back to the airport as she was in medical school. They help us take everything down to the car and get it loaded.
Finally, we were leaving the hospital and when we first came, I was not sure this day would ever arrive, so while I was still concerned, I was happy we were out of immediate danger. We both knew She had a long difficult road in front of her. I remember we stopped by the same CVS store we had been in the day before she went to the hospital. Connie even got out of the car and came into the store for a few minutes. Here is the email, I sent to everyone after we got home, and she was resting. I had a lot to do when we got home so it was almost 5:30 before I got this email sent.
Dear Friends,
Connie and I would like to thank each and every one of you for your prayers because they have made a difference, Connie came home this afternoon after 16 days in the hospital. Home Health Care will be coming by tonight to show me how to get her food through a pic line. She is not able to eat solid food yet and can only take in small amounts of liquids, so far, in the near future, this will be the way we need to get her nourishment. They are working to get her strong enough so that she can continue her chemo treatments.
While this is not ideal it is still better than what we thought shortly after she was admitted to the hospital. We were not sure at that time if she would ever come home and if she did, they would have to place a tube in her stomach to drain it. God has been good to us and has granted us small miracles along the way. I believe that was through all the people who were praying for her.
She is still weak, and it will be a while before she is ready to see people, but we are trying to get there.
I ask all of you to continue to pray for her as we still have a long and difficult road ahead. But as Connie and I have witnessed your prayers have made a difference and for that, we are deeply grateful.
Thank you, guys, so much for your continued prayers as we continue this fight against cancer.
God has been good to us, thanks to all your prayers.
Connie and Joel (Sparkie)
Tuesday night, they were supposed to bring the TPN and all the equipment and show me how to use it. They were supposed to come around 8 but the lady showed up around 7:15. She had brought all the equipment but the people bringing the TPN had not shown up. Lizzie was coming so she could be aware of everything that I needed to do. She thought it would be better if we had two people listen and she always took better notes than I did. She got here before they delivered the TPN. It arrived at about 8 and then we got to work, and I learned how to do everything. I was just hoping I would be able to redo it again the next night. Once we got it set up it took 12 hours for all the nutrition to empty out of the bag. So, for a long time, I would have to get up during the night and help her get to the bathroom. The TPN hung on a long pole that Connie had to drag everywhere she went. But I was so glad to do it for her.
July – 2015
Wednesday, July 1st, was a day for us to get reacclimated to being home. Connie was tired and spent a lot of the day resting and sleeping. That evening I was able to get Connie hooked up to her TPN, and luckily, I was able to do it and everything went smoothly that night. On Thursday we had to go to Dr. Connors so they could do some follow-up blood work on her. Thursday night’s TPN did not go as well, I notice the two times I got up with Connie, the TPN did not seem to have gone down that much. So, after 16 hours when still over half the bag was left, I disconnected it. After talking to everyone they thought it was the pump, so they sent another one out that afternoon and after that, the TPN seem to work ok.
Over the 4th, weekend, Connie, and I just rested. She was still very tired from her ordeal at the hospital and the chemo. I was extremely worried as she still was not eating and not taking in much liquid. After the Thursday night fiasco with the TPN, everything seemed to be working correctly. She had no energy and was struggling to do things. She was resting a lot. I was so thankful for the TPN as I knew she was getting some nourishment.
On Tuesday the 7th, Connie had been home for a week. It was the first Tuesday of the month and Connie usually did Meals On Wheels with Lizzie but she had not been doing it since January. She wanted me to go and do MOW and have lunch with Lizzie, as she thought I just needed to get out. We were still trying to get into a routine with the TPN. We could either start it at 7 and be done with it the next morning at 7 or start it later and be done later. For the most part, we decided to do it somewhere between 7:30 and 8:30 in the evening. That would be what we would try to do. I did go to mass that evening as it was a healing mass for Connie.
On the 8th, there was another healing mass for Connie in the morning. I did not go as we went back to Dr. Connor at 10:30 for Connie’s next round of chemo. There was a routine for getting all of this done, first sign in at the lab, and then after the labs were done go sign in for, her chemo. Once they got the labs back and everything looked ok, they would then call Connie for chemo. You have seen how it works on TV. They would get Connie settled into a chair and get everything hooked up. I would get her blankets and most of the time Lizzie would be with us and she would be there to talk to. After a while, it got where Connie slept more and more through the chemo. I would get the warm blankets and sometimes I would need to get her two. They also had little juice boxes and after a while, she was able to sip on some of those. It got to where we knew a lot of the people coming to chemo and all of us try to keep our spirits up. It usually took about 3 and one-half hours. She would leave with a pump that she had to wear for the next 48 hours. It was hard on me emotionally, but I am sure it was harder for Connie. It was so hard seeing her not being able to eat.
Tonight the 8th was the first chemo Connie had since leaving the hospital and being out on TPN. It made getting up in the middle of the night so hard as not only did she have the chemo bag on, but she still had to push the pole with the TPN to get to the bathroom. She started sleeping in the guest room which was a good way from the master bedroom so she could rest and get away from my snoring. Since we had started the TPN over a week ago, she would yell at me and I would come to help her to the bathroom. It was frustrating because even though I try to not fall into a deep sleep, sometimes she would have to yell three or four times before I heard her. It was so hard for her and my heart was breaking.
The rest of the week was uneventful as Connie would sit on the back porch for a little bit, but it was hard on her as she tired quite easily. We did not know if Connie would ever eat again but we knew she had to because she could not stay on the TPN forever. The TPN was helping as she was still losing weight but just not as and as fast. Knowing how much Connie and I like to go out to eat it was hard to see her barely able to eat but glad at even the smallest amount of progress.
On Tuesday, the 14th, Connie returned to the cancer center for hydration. Since she was having a hard time eating, she found that this was helping. We would always go in two or three times between chemo treatments for hydration. That day I also took our Equinox to Herb Auto Repair as one day during the previous week, I had hit a door that had been left swinging at McDonald’s where they threw their garbage away. I should have seen it, but I think with everything going on I was distracted. Below is an email, I sent out to update everyone about how Connie was doing. I sent it out on Wednesday evening the 15th.
Dear Friends,
Several people have asked me over the last few days how Connie was doing so I thought I would just send out a short email.
Connie has been home from the hospital for two weeks now and after some equipment problems, I think we have this intravenous feeding down. I usually hook her up in the evening before bed and get her disconnect after she gets up. It takes a minimum of 12 hours. I cannot believe the things I have learned to do.
Connie still gets tired very easily and does not seem to have much energy. Her spirits are good, and she seems to be taking in more liquids. But she is still losing a little weight, but it has slowed down quite a bit.
She will be returning for chemo next week on Wednesday and sometime after that, we are hoping they will do more tests to see if the chemo is working.
She asked me to ask you guys to continue to pray for her as she has a difficult road ahead of her. We are so grateful to all of you.
Just know we appreciate your prayers very much and they provide us peace and comfort. I will let you know when they are going to run the test to see if the chemo is working. Again, thank you so much for your prayers.
Connie and Joel (Sparkie)
The rest of the week was uneventful. Even though Connie was scheduled for chemo on Wednesday the 22nd, of July we went into the cancer center on Tuesday afternoon for hydration. I believe it was this past Sunday the 19th, after mass, I brought her an iced coffee from McDonald’s which she really enjoyed. That day was so exciting because I think she actually drank an ounce of it. That was so good to see. I know I rejoiced because even though it was just a small amount it was something, she had not been able to do before. At this time, she was not allowed food but only liquid drinks and maybe clear chicken or beef broth. It was during this week that the doctor let her start eating soft foods. On Thursday Lizzie brought Connie some watermelon and every now, and then she would put a piece in her mouth. You do not know how exciting these small steps were for me. This was so hard on her, but I also know I was hurting, as her not being able to eat was so hard to watch.
On Friday, the 24th, we went back into the cancer center so they could remove the pump. It was a little after 11 when we got there but we had to wait for a little bit until the chemo in the pump was finished.
It was somewhere around this time that we came up with a new routine for the night. We always tried to judge how she was feeling and what time we would start the TPN as it had to go for 12 hours. As I had said earlier, Connie was sleeping in the guest room and would yell at me if she had to get up and go to the bathroom as she still needed help, she had to maneuver the big pole around and she was still weak and she just needed help. But Connie came up with a good solution, we would both take our cell phones to bed and she would call me as that was much better than her trying to yell for me. She no longer had to wait until I har her as the phone woke me up immediately. We did that the rest of the time she was hooked up to the TPN. It worked so much better.
On Monday, the 27th, we went in to get a shot to boost her white count, it had been good enough to have the chemo last week, but they wanted to make sure they kept it up. That was at 10:30 and at 11:30 we went over and got her hydration. Thank goodness for the hydrations as that seemed to help her a lot since she was still struggling to eat and not drinking as much as she should. Below is a copy of the email I sent out on that Monday night.
Dear Friends,
First let me thank all of you who have sent cards, food, and flowers, called, or just stopped, and ask me how she is doing. It is very much appreciated.
As of right now, Connie has a CAT scan scheduled for Wednesday morning. I will be confirming that with her oncologist on Tuesday. This should give the doctor some insight into if the chemo is working or not. She is still being fed intravenously but last week the doctor gave her permission to try soft foods such as mashed potatoes, etc. before she was only allowed to have liquids such as broth. Even though she can have soft food she can only have a small bite as we want to make sure everything is working. Plus, with getting all her nutrition intravenously she is not very hungry. She actually gained a couple of pounds on our last doctor’s visit; I think it is because she is so tired and does not have much energy. I have gotten quite good at connecting everything for her intravenous feeding but not doing quite as good on laundry and all the other household items she used to take care of. But who knows maybe I will become a housewife yet?
We are asking for your prayers again as they seem to sustain and help us. Please pray that the CAT scan will show that the chemo is working, that she will continue to improve, and that it will provide us with positive feedback as she continues this battle. But also, to give us the strength and grace to handle whatever comes our way.
Please continue to pray for Connie and good test results from this scan.
Her spirits are good, and she appreciates everything you guys have done for us but especially your prayers as she continues this difficult journey.
We are so grateful to all of you.
Just know we appreciate your prayers very much and they provide us peace and comfort. I will let you know when I know something about the scan, but I do not expect to hear anything until we see the doctor on August 5th.
Again, thank you so much for your prayers.
Connie and Joel (Sparkie)
The 8:30 AM mass on Wednesday, the 29th, was for Connie. That afternoon we went to Dr. Connor at 3 PM for a CAT scan. I mentioned that in the previous email. On Friday, the 31st we went in at 10:30 AM for hydration. We did that two or three times between chemo treatments as it seemed to help Connie.
August – 2015
On Monday, August 3rd, I had a dental appointment. Since it was the first Tuesday it was the day that Connie and Lizzie did “Meals on Wheels”. Since Connie was not up to it, I went with Lizzie that day. After finishing delivering the meals we stop at Dairy Queen for lunch. During that time Dr. Connor’s office called me about Connie’s chemo appointment scheduled for Wednesday. It turns out her blood work was not good, and she was going to have to have some shots to boost her white cells. So, I went home and got Connie. We went directly to the doctor’s office for a shot. It turns out she was going to need three, so we had to go back into his office for the next two days. On Wednesday before getting her shot we meet with the Physician’s Assistant as Dr. Connor was on vacation. It was a day we were hoping to get chemo but that all changed with the phone call yesterday. Below is the email I sent out after we visited with the Physician Assistant.
Dear Friends,
First for some good news. The bowel obstruction seemed to have been resolved. So that is good news.
The rest of the CAT scans showed no changes.
We met with the Physician Assistant as the doctor was on vacation, so I do not feel we got as much information as what we would have gotten from the doctor. But the doctor had reviewed the CAT scan and we are going to stay on the same course of treatment, so I guess that is a good sign.
Even though the bowel obstruction seems to have been resolved, there is still some haziness and other things going on there. It does not seem to have gotten better but it does not seem to have gotten worse. Because Connie is in a weak condition, she will continue with the TPN (food nightly through a pick line) but she will be allowed to eat bytes of different food throughout the day. We did not talk to the Physician Assistant about the TPN, but we are hoping in the future they will cut back on the TPN and allow her to eat more but we will wait and see what happens.
Connie was not able to receive chemo today as was scheduled. We got a call about 2:30 Tuesday afternoon telling us that her white count was at 0.1 and her neutrophils were at 0.0. We had to go in immediately for a shot. She received another shot today and will receive another on Thursday. On Monday they will check her blood again and if everything is ok, she will have chemo on that day.
Because of her blood counts, she is very susceptible to infections and diseases right now. The main problem seems to be extreme tiredness and weakness. Hopefully getting her blood counts back in order will help some.
I think we have been granted another small miracle because when we left the hospital, we were not sure she would be able to have anything but liquids for a very long time. She has been out of the hospital for about 5 weeks and now can eat small bites of things.
We thank each and every one of you for your prayers and we ask that you continue to pray for her as we still have a long and difficult road ahead of us. Your prayers have sustained and helped us.
Connie’s battle continues but with your prayers and God’s grace, we will continue the fight.
For the most part, her spirits are good, but she does get discouraged about her lack of energy and weakness.
We are so grateful to all of you.
Just know we appreciate your prayers very much as they provide us peace and comfort. We are praying that she will be able to have the chemo again on Monday.
Again, thank you so much for your prayers.
Connie and Joel (Sparkie)
On Thursday we went in for the final shot to build up her blood counts. After the shot on Thursday, I attended the 6 PM mass as it was for healing for Connie. Connie was starting to take in a little more fluid and eating a little bit more but mostly broth.
At this point, I was getting genuinely concerned about how weak she was, but she was getting ready to try some real food. I am not sure when she started but I think it was this week or next. It was still soft food, but she started with spaghetti and butter on it. She did not eat much but it was a start and I was so happy to see her eat something.
Monday, the 10th, arrived and since Connie had missed her last chemo treatment because of her blood work, we were hoping today that she would be able to restart her chemo as we did believe it was helping. As usual, we had to get there early so they could get the blood work done before we met with the doctor. When they got the results to the doctor which usually took less than 30 minutes, we would meet with him. Thank goodness all the shots she had taken the week before worked as she was given the ok to get her chemo. Even though it was hard on her, she was ready to keep moving on with the treatments. Now I was able to get her some of the things they had available while she was getting chemo to eat. They were just little things and she could not eat much but we knew things were improving. The main thing now was she was very weak, she still was not eaten very much but she seemed just so tired. On Wednesday, the 12th, we went back in and had the pump she had to wear for 48 hours removed. On Thursday we went back in for hydration and a shot. Unlike the last time when she had to take shots three days in a row, this time they gave her a different shot and she only needed one. They want to make sure her blood work stayed in the good range for her next chemo.
Connie was struggling with being so weak and I thought the chemo was taking its toll on her. On Monday, the 17th, and Thursday the 20th, we went back to the clinic for hydration. She was still too weak and unsteady to get into the shower, but she had always loved the spa. So, I would tape up some of the things that had in her and she would get in the spa. When she got out, she would sit in a chair on the back porch and just doze for a little bit. Below is the email I sent to one of her friends on the evening of the 20th.
Hi Nancy,
I apologize for taking so long to get back to you. Connie is about the same. But she has good days and bad days. I think the biggest problem is she is just so tired and has very little energy. I think because she was so sick and had lost 40 lbs. before she started the chemo, it has been a little rougher for her. But she is hanging in there. Most days her spirits are good. I will probably send out an update after the next doctor’s visit on Monday. Thank you for asking and tell Paulette I said hello.
Sparkie
Monday the 24th, I remember so well as even though Connie was weak, she would usually walk into the clinic, but not this morning as Lizzie had to get a wheelchair to take her in to see Dr. Connor. Connie had lost a lot of weight at this time and she was complaining about her leg being hot. She did not complain about any pain in it just that it was hot. The doctor felt it but did not comment on it at all, but because all her blood work was ok, she started her scheduled chemo. We were talking to one of the chemo nurses and Connie was telling her about her leg feeling hot. She felt it and then went to talk to the doctor. Evidently, the chemo nurse felt that it was something that the doctor should look at more. He came out and told Connie he was scheduling her for a sonogram on Wednesday at 10:30 AM. So, after the sonogram, we were going over to have the pump removed and get Connie some hydration. The following is the email I sent out after our doctor’s visit on Monday.
Dear Friends,
Connie saw her oncologist and had chemo today.
First thanks to all of you for your prayers.
Now for some good news. The doctor is cutting the TPN (food she received intravenously overnight) in half. He wants her to try to get half of her calories by eating herself. She has to stay away from dairy, salads, raw vegetables, etc. but there is a lot of things she can have. This will start Thursday when they deliver next week’s TPN. He wanted to make sure her bowels are functioning normally.
Today was the first time we saw the doctor since the CAT scan (the last time we saw his assistant). He was pleased with the CAT scan and will be doing another one, I think after the next chemo which is scheduled for Sept. 8th. At some point, he will stop the chemo for a few weeks so he can do a PET scan. The PET scan gives him better results than the CAT scan, but you have to be off chemo for a few weeks before a PET scan can be done. We are not sure when that will occur.
He did remind us that this is not like some cancer where you go through chemo and are done, he says Connie will be under some type of treatment forever. That could be chemo at a lower dose or something else it is too soon to know but he wanted to remind us that when we finished this round of chemo we are not done. He had told us that when we started.
We are thrilled that they are cutting back on the TPN and she will be trying to eat more on her own. Pray that that goes well for her.
She is still very tired and is having a lot of pain in her legs. They are scheduling a sonogram on her legs to make sure there are no blood clots there. I am waiting on the hospital to call and schedule that.
The small miracle continues for us as Connie will now be eating half of her calories.
We thank each and every one of you for your prayers and we ask that you continue to pray for her as we still have a long and difficult road ahead of us. Your prayers have sustained and have helped us.
Connie’s battle continues but with your prayers and God’s grace, we will continue the fight.
We are so grateful to all of you.
Just know we appreciate your prayers very much as they provide us peace and comfort. We are praying that the chemo is working and that the next CAT scan will show improvement.
Again, thank you so much for your prayers.
Connie and Joel (Sparkie)
On Wednesday, the 26th, we went in for the sonogram, and they were running late, we were out of there in time to go get her pump removed and start the hydration. While she was getting the hydration, they had gotten back some preliminary notice from the sonogram and they sent me to the pharmacy in the clinic to get some pills to help with blood clots. She took one while she was getting hydration, but that was the only one she ever took. Before she finished hydration, they must have gotten some more results from the sonogram. The chemo nurse came over and told Connie they were stopping the hydration and wanted her to go back for more tests. They had only tested her legs at the time and now they were going to test her upper body. As soon as the tests were done, they told me she needed to go to the emergency room. I was going to take her, but they would not let me. I drove over to the emergency room, while a nurse would take her there. The place where the test was done was across the street from the hospital but there was a catwalk connecting the two buildings. It was a good half a mile walk. They had Connie in a wheelchair and took her to the emergency room. It was then I found out that some of the clots had moved from her legs to near her heart. It was scary. The doctor showed up that evening and told us that it was common for people to develop blood clots, when on this kind of chemo.
The next morning the chemo doctor Dr. Connor consulted with the surgeon that had done her exploratory surgery, Dr. London, and other doctors. The next thing we knew she was scheduled to have a filter put in at noon. They go up through a vein in the leg and put something in to catch the blood clots traveling from the leg toward the lungs and heart. All went well with the surgery but we had gotten other bad news that morning from her blood work, which showed she had lost a lot of blood so they gave her a transfusion before she went for the surgical procedure. Now we had to worry about what was causing the blood loss, along with the clots. Connie had been admitted to ICU on Wednesday and was going to remain there overnight on Thursday because of the blood loss and the filter they had put in.
Friday came and the blood work showed some blood loss, but the doctor was unconcerned as he said that amount was insignificant and something that may happen in a normal person. The good news was they were going to move her out of ICU that afternoon and keep an eye on her for a few days. We thought she might get out of the hospital on Monday or Tuesday. It seems things were looking a little better. They wanted to check her stools to make sure they did not contain any blood. Luckily, Friday nights her stool was ok and showed no blood in it.
Saturday was just a normal day and I could tell Connie was already feeling better, and her energy level had picked up. It was unbelievably bad for the past few weeks, but I could tell a difference already. The doctor came in and was happy that there was no blood in the stool. After mass on Sunday, I went straight to the hospital and was hoping to get there before the doctor did. I made it as he came about thirty minutes after I arrived. We were both surprised when he told her he was going to dismiss her today as we thought she would be in there until Monday or Tuesday. He then told me he was going to remove the pick line from her arm which had been in for about two months. He said now that she was eating half of her calories, that I could use the port for her chemo for her TPN. Since she was getting chemo every two weeks. There would be two nights every other week when she went home with a chemo bag that she would not be getting the TPN. We saw this as a sign of improvement. Because of the blood clot, I was going to have to give Connie, two shots a day (every 12 hours) of Lovenox. They then sent a nurse in to show me how to give the shots.
I took Connie, home and made sure she was ok before I went out to the CVS pharmacy, to fill her prescription for Lovenox. When I got to the pharmacy, they told me it would be $8000.00 for a month’s supply. I then asked if there was a generic and there was, and it would only cost $780.00. He talked to the doctor and we were able to get the generic. So that night I started giving Connie, shots and it would continue through November. I am not sure, but it seems to me that the blood clot was the thing that was making her so tired. Below is the email, I sent out after we got home that day.
Dear Friends,
Thank you so much for your prayers,
Connie came home today and is now in bed resting. As I said in my previous request for prayer, she had lost some blood and they were afraid of internal bleeding. Thursday afternoon they put a filter in one of her veins to catch any blood clots, that might be traveling from her legs to her chest. On Friday they started a drip to see if the bleeding was still occurring and moved her out of ICU to a regular room.
Saturday morning the DR came in and said there was no sign of bleeding now and none in her stools, so they rescheduled her to start the shots they were giving her for her blood clots. This morning they test her blood again and everything looked ok, so they let her come home. That was a surprise because we initially thought we would not get out until Monday.
On Saturday, the Dr. told me he had no idea why she lost so much blood, but the internal bleeding must just have stopped itself. I prefer that your prayers gave us another small miracle. This morning the Dr. said the blood loss could be related to one of the chemo drugs she is getting. I prefer to think it was your prayers that stopped the bleeding and we thank you so much for them.
Connie is resting and I must go pick up a prescription as I will be giving her an injection every 12 hours until they are sure her gut is working and will dissolve a pill correctly. They told me this could be a few months but really did not set any timetable.
They will be scheduling her for a procedure to remove the filter they placed in her to catch any additional blood clots in the next few weeks. This is an outpatient procedure.
Again, thank you so much for your prayer, Connie and I believe they have made a huge difference and we appreciate all of the prayers.
We ask that you continue to pray for her as we still have a long and difficult road ahead of us. Your prayers have sustained and helped us.
Connie’s battle continues but with your prayers and God’s grace, we will continue the fight.
We are so grateful to all of you and with your prayer, we have gotten through this obstacle.
Just know we appreciate your prayers very much as they provide us peace and comfort. We are praying that the chemo is working and that the next CAT scan will show improvement.
Again, thank you so much for your prayers.
Connie and Joel (Sparkie)
Even though her oncologist had discharged her from the hospital we still had to go in on Monday to see him. I think she may have even gotten hydration that day.