Sunday, September 22, 2013
I have decided to continue blogging, but on a different blog. The new blog is http://hopeanchorsyoursoul.blogspot.com/ I feel I need to share the things I have learned and am still learning through this whole process...being widowed definitely has it's challenges!
Friday, March 15, 2013
On Sunday, March 10th, I started to feel those same familiar pains in my left side…I was not happy…I did not want to have to deal with this right now on top of everything else. I kept praying for a miracle. I became so sad and discouraged because the pain was not improving as the day wore on…in fact, it was progressively getting worse. I knew that I would be headed to the doctor in the morning…where was my miracle?
I did receive a miracle…just not the one I had been praying for (to be healed)…I was sitting on my bed using my ipad…I decided to check facebook…which I never really do on my ipad…I noticed Paul’s name on the side bar. I decided to click on it, even though I knew he wasn’t really on there. This is what popped up:
To read those words,” MISS YOU, LOVE YOU-“good night sweetheart” sing to the girls and give them a kiss for me.” Wow! I couldn’t believe it…I started to cry…Sophie was sitting by me on my bed…I got up to go downstairs so I could REALLY cry. She asked me where I was going and if I was crying. I said yep, I am crying a little because I miss daddy. I also told her I needed to go down stairs for a few minutes.
As soon as I got down stairs, I really started to cry. I called a couple of friends to come over and see the message…so, people would believe me…actually, I guess it was so I would believe it. They were as amazed as me. They suggested taking a picture (that hadn’t even occurred to me). So we did…now everyone can see the message.
I looked at the date on the message and from where it was sent. I noticed April 19, 2010, 8:39 p.m. I also noticed it said it was sent from the web, not from heaven! Anyway, I couldn’t remember Paul ever sending me that message. I wracked my brain and couldn’t think of where he would have been that he would send that message to me. After a little digging and research, I discovered that it was the only private message he sent me on Facebook and it was when I took the girls to St. George for spring break (he wasn’t able to go with us).
This message was written to me three years ago and I don’t remember ever reading it (I probably did, I just don’t remember). I know that it was a message from Paul, for me to not only read then but to read now, to help me with my sadness. Just as the scriptures were written many years ago…we are told to read them daily because we forget what we read and we need that reassurance and knowledge that God does love us and wants to help us. Paul sent me this miracle as a reminder that he loves us and is watching over us. I have re-read the message daily to help me cope with his loss. I need that constant reminder that he loves me and misses me as much as I love and miss him…it is weird but you start to doubt that they still love you and miss you…I guess I feel like he will forget about me and move on…
On Monday, I went to the doctor. Of course, my diverticulitis is back. I go daily to my doctors office and get a shot of antibiotic for seven days. Today, I got my fifth shot, so I am almost done. Yeah!
Because I have had several flare-ups my doctor has suggested I have surgery to remove part of my colon. I meet with a surgeon on Tuesday to discuss my options. I honestly don’t want to do surgery if I can help it. Diverticulitis is definitely a problem that is worsened by stress…let’s see have I had stress in my life lately?
Anyway, I may try a few other things, before I do the surgery, to see if I can prevent it from happening again. I will know more once I meet with the surgeon. It is the same surgeon who removed Paul’s stomach…that might seem a little weird at first... he is an excellent surgeon.
On the day I went to the doctor, Hailey called me from school at about 2:15. The first thing she asked was when I would be having surgery. I explained to her that I may not have surgery and I still needed to meet with the surgeon. Then she said that her stomach had been hurting and she really wanted to come home. I asked her if she felt like she could stay until school got out at 3:30. She said no.
When I picked Hailey up, I asked her is she was sick because she was feeling stressed. She said yes and started to cry. She told me that she was worried they were going to cut me open and find cancer. She said that she was so afraid that she was going to lose me too. I reassured her that my problem is not cancer and that I won’t die anytime soon (for my children’s sake, I hope not). It breaks my heart that my children have to worry so much about these things now…
This morning, Sophie woke up with a big smile on her face. She said, “Guess what mom?” I said, “What?” She said, “I had a dream with daddy in it. He told me that he loved me very much!” I asked her where he was while he talked to her. She told me that he was hanging Christmas lights on the house. She said, “Oh, mommy it felt like he was really here with me.” She also said, “Isn’t it great that daddy was with us in this room last night helping me to have good dreams?” Of course, I was so happy for her. I told her that it is great blessing to have her daddy watching over us.
As soon as Hailey woke up and came in to my bedroom (Sophie has been sleeping with me), Sophie told Hailey all about her dream. I am truly grateful that Sophie had that experience. She really needed that…I hope there are more experiences like that for her and the rest of us. Okay, I must admit, I was a little jealous that I didn’t get the same dream…I actually had a horrible dream last night.
Getting through all the paperwork, health insurance issues, and other miscellaneous things have been quite exhausting. I have spent hours on the phone. Just thinking about it makes me tired. Health insurance is definitely the worst issue…at first they told me I was going to pay $1600 a month…then they sent me something in the mail that said it would be $99 a month…then they finally called me and told me I would be paying $480 a month for six months and then the price will go up to the higher amount…they are subsidizing for the six months. They still can’t tell me what the higher amount actually will be…somewhere around $1100-$1600 a month.
I have been calling on private insurance, which we will eventually need anyway. Well, that has been a joke. They won’t accept me because of my diverticulitis. They said the only way I would be accepted is if I have the surgery…then the insurance companies will look at me in 1-2 years afterward.
I asked about individual plans for just my children. Because of Obamacare, the insurance companies will not do individual plans for children. Evidently, in 2010 a law was passed that all children under the age of 19 have to be accepted for health insurance regardless of their health status. This was not well received in the insurance industry, so they felt they needed to change their policies…I won’t go into all the details here…
Anyway, I have actually discovered a benefit for me with regards to Obamacare. As of January 2014, Insurance companies can no longer deny people insurance due to health issues. Everyone will be entitled to it. I have always felt strongly that everyone should be entitled to health care…now, I just have been placed in a position where I feel even stronger about it. Because I don’t want to get into political issues here, I will just say that I am relieved to know that we can get health insurance next year… Cobra can get very expensive!
Today I am grateful for the beautiful sunshine that we have seen for the last couple days. I am also grateful for my amazing family and friends who continue to support me with love, help, and kindness.
I miss Paul every day. I have felt his presence with me at times….I just wish it could be all the time! Maybe I will get a dream like Sophie tonight!
Thursday, March 7, 2013
Paul has been gone for 10 days now…which means I am 10 days closer to seeing him again! I am trying to keep really busy so I don’t do much thinking…but there has been a couple of days that I was not very successful…my emotions definitely got the better of me.
Paul’s funeral was amazing! I am so grateful for all the wonderful family and friends that came to show their love and support. What a tribute to Paul!
After Paul’s funeral service, we had hired a man to play the bagpipes at the graveside service. He played Highland Cathedral…it was so beautiful. We also released 6 white doves and 52 (Paul’s age) light blue balloons. I know that Paul was very pleased!
Paul had the best day he’d had in a couple of months on Valentine’s day. It was such a good day. I believe it was a tender mercy from God. We got to have a last wonderful day together as a family. By the next day he started to decline again…
Our older children came and spent a lot of time with us the last two weeks of Paul’s life. It was nice to have visits with the grandchildren…sit around in our bedroom by Paul and talk about everything under the sun…including his funeral arrangements. I know that even when he couldn’t say much while we were talking, he was happy. Every once in awhile he would give a thumbs up sign…or nod his head in agreement. It was very hard for him to talk. He was happy because his family was here with him. His family was the most important thing to him.
The last week of Paul’s life was so painful to watch. He had terminal agitation…he had hallucinations, severe restlessness, anxiety, etc. A few nights before he passed away, was the most brutal. He kept getting up every 10 minutes and trying to get out of bed. I would hear him and look over to find that he had ripped off his oxygen and was sitting on the chair by his bed trying to get up. I would go over to him and he was gasping for air because he needed his oxygen to make him more comfortable. I would get the oxygen put back on and get him back in bed…only to have it happen again about 10 minutes later.
By about 3:00 a.m., I was so exhausted I went and got Sheila to be with him while I went to get a little rest in the other room. I was grateful to have our older girls spending the nights that week with us because I found I needed their help on a regular basis. Paul could not be left alone at all…my sister came and stayed the weekend with us as well. It was amazing how many of us it took to care for him.
The biggest problem at this point for me was that I was so exhausted. I had been Paul’s primary caregiver for months now. I was the only one trained at home to give him medications in his port and/or PICC line. Finally the Friday before he died, we trained the girls how to do it as well. Which turned out to be a huge blessing for me.
Another problem was that hospice had not given us adequate medications to make him comfortable. I will not go into detail of the mistakes, but lets just say that we did not get morphine and Haldol going until the Friday before Paul died. Those medications made a HUGE difference!!! He was finally able to relax and just sleep.
Paul slipped in to a coma on Sunday, February 24th. I knew that he was going to be dying very soon. I woke up Monday, February 25th, at about 3:45 a.m. I was listening for his breathing…I could not hear anything…I touched his chest…I could not feel any movement…I flipped on the light…I watched to see if there was any movement…there wasn’t any…I knew he was gone. I am grateful that I awoke when I did because he must have just passed. He still had some coloring in his face and his head and upper arms were still warm. Had I woke up much later, he would not have had any color or warmth left. I really feel like his spirit woke me up so that I would not wake up to his body all cold and grayish…about 30 minutes after I found him, he did not even look himself at all…he had no coloring left (very grayish) and was very cold to the touch…I think that would have traumatized me to wake up to that.
I think the hardest part of that day was when the mortuary came and got his body. I could hear them getting him off the bed and bringing him down the stairs (I did not watch). My friend had come over and got the girls so they would not have to see them take their daddy out of the house…that was not a memory I wanted them to have.
My heart is very happy for Paul, but very sad for me. I could feel that he was happy to be free from all his pain. I could feel his presence with me. In fact, I felt his presence with me a lot last week. Oh, how I love that man!
The night of the viewing was the first time I saw Paul since his death. I was not sure what I would find. In fact, I was thinking we would probably have a closed casket funeral. He did not look anything like himself when he died. He was so thin…somewhere in the 120 pound range (he was 6’3’’ tall). Ultimately, I watched my husband starve to death. He looked like he had been in a concentration camp…
As I walked into the mortuary that night, I totally lost it. I did not want to see his body…I just wanted to run away as fast as I could…I did not want to have the image I had in my mind, on the day he died, brought back into my memory. He did not look like Paul.
Family came out into the foyer and told me he looked okay, so I finally went in and saw him…I really cried…but I knew it was just the tabernacle that housed his spirit…he was not there. It still did not look like Paul to me…but at least he had some coloring (from all the make-up). I could feel his spirit with me, which brought me great comfort!
I have my good days and my bad days. Yesterday was definitely the worse day I have had yet. I cannot adequately describe the sorrow you feel when you lose someone you love so much. Your whole body aches with sorrow. I think I was dehydrated yesterday from all the crying… I think I am getting a small glimpse of what our savior felt…
I have prayed to Heavenly Father that I won’t have to feel this sorrow…He is helping me through it, but I still have to feel it. We are here to experience mortality. The only way we can truly understand sorrow is to experience it. The purpose of our earthly life is to learn things here in a mortal body…things that cannot be learned without a mortal body.
I am grateful for loving family and friends who are helping me through this difficult time. I know that Paul is still watching out for us!
Monday, February 25, 2013
My sweet husband Paul passed away at about 3:45 a.m. today. Every day I try to find things to be grateful for. Today I am grateful that he is out of pain and is very happy. His spirit is free from a very tired and sick body. Fortunately, his trial is over…I wish I could say that mine was over, but I know that I am just beginning in to a new phase…
Even though, I am glad that he is no longer suffering, my heart feels as if it is breaking into a million pieces. I feel very lost and lonely inside. I already miss him desperately and it hasn’t even been 24 hours…the tears have been flowing very freely tonight. I keep looking over at where he was laying just last night…oh, how I would love to see him…hear him…feel him. I honestly hope that I am strong enough to do this…this is the hardest thing I have ever been faced with…I can hardly believe that I am a widow.
I am too tired to share much tonight. I hope I have the energy to write more tomorrow about the things we experienced the last two weeks of Paul’s life.
For now, I just need to say…Cancer sucks!
Wednesday, February 13, 2013
Since I can’t sleep right now, even though I am totally exhausted…I guess I will update the blog.
Our life was, once again, turned upside down yesterday. We went to Huntsman to attempt Paul’s 5th round of chemotherapy. While we met with his oncologist, we discussed how sick Paul has been. He has still been running low-grade fevers, having severe abdominal pain, and a lot of nausea and vomiting. The doctor examined him…said he heard no bowel sounds…said Paul’s gut definitely looked more bloated…then he said the news no one wants to hear…”Paul, you have fought a good fight, but it is time to stop fighting…the chemotherapy is not working…you need to go on hospice and let them help you be as comfortable as possible…”
I cannot say that I was shocked with the news I just heard. For several days I had feelings that is what the outcome was going to be. I knew driving down that day we were going to be done…no more chemotherapy. Paul said he knew the same.
Even though we knew this was coming down the pipe, both Paul and I cried intensely hard. Every time we would look at each other yesterday we would cry. I don’t think you are ever prepared to hear that you are going to die soon…
We were fortunate enough to get Paul in with a pain doctor after his appointment with his oncologist. The doctor made room in his schedule to do a celiac plexus block (this procedure is used for pain control by blocking the nerves which come from the pancreas, liver, gall bladder, stomach and intestine). Paul has had a lot of relief from pain since they did this procedure yesterday.
In the meantime, we are now utilizing hospice. We are working to “tweak” the medicine for his nausea and vomiting. That has been very difficult to control. He has had little pain all day today, but he is still having bouts of nausea and vomiting.
We have been told that he will probably live 7 to 10 days because of his situation…obviously, it could be less or slightly more…it is in God’s hands now. One of the main reasons why he will go quickly is because he cannot eat or drink by mouth because of his bowel blockage. He is already so thin and frail. He is no longer on TPN because it is not used for someone who is terminally ill. They let us keep Paul on it long enough to give this new chemotherapy drug a chance…I really wished the drug would have worked.
Last night was rather strange…we lay in bed talking about his funeral. We haven’t talked much about him dying or his funeral because we have been too busy fighting to keep him alive. It is hard to stop fighting…everything inside me keeps saying there has to be something else I can do…it just can’t be over…I don’t want it to be over…but, he is so tired and weak…he has suffered so much…it has to be over…he shouldn’t have to suffer any longer…this nasty cancer is ravaging his body.
Tonight, after we finished up with the girls valentine cards, we pulled out the video camera and asked daddy questions. The girls always want to play with the camera, so this was a great opportunity to have some fun as we create a video for future viewing. We are trying to create memories that are positive for the girls. This will be fun to watch together and help us to remember just how amazing their daddy was/is!
Right now I am so grateful for loving family and friends. I am able to do what I do because of all the love and support I am receiving. Thank you all!
Sunday, February 10, 2013
Yes, I know, it is time for an update. Everything has been so crazy lately that I have been too exhausted and busy to even write. I am not sure where to begin, so I guess I will just start somewhere.
Paul was hospitalized this past Monday, February 4th. He has been spiking fevers off and on for several weeks now. He also had a wicked cough…which progressively got worse. Each time we went in to the doctor they would listen to his lungs and say he was fine…didn’t hear anything indicating problems.
We thought Paul’s fevers were related to his chemotherapy, since they had already checked his blood and stool for infections twice, and couldn’t hear anything “crunchy” in the lungs. He had been following the same patterns each time he had chemotherapy…chemo on Tuesday…very nauseated and sick on Thursday…chills and fever on Friday…start to feel better on Saturday. He had also been having a sore throat and other flu like symptoms, which can be side effects from this chemotherapy…a bad cough is also listed as a side effect. So, we all just started to think it was chemotherapy side effects…especially since his fever would come and go.
On Friday, February 1st, Paul spiked his fever again at 103.5…just like the previous week. It started to go down a bit, but not as quickly as usual. He seemed a bit better fever wise on Saturday and Sunday, but then by Monday morning he spiked another fever of 104….his cough had also gotten much worse. I called our nurse and told her about the situation. She agreed we needed to get him up to the Acute Care Clinic at Huntsman as soon as possible.
When we arrived at Huntsman, Paul’s fever was about 104.5, so they immediately started filling ice packs and putting them around his body to cool him down. In the mean time they started taking blood and urine to start looking for infection. We talked to the doctor about his persistent cough. He listened to his lungs and said he couldn’t really hear anything that sounded like a problem, but he felt like they needed to do a chest x-ray to see if he had pneumonia. He said that people with compromised immune systems (especially people with cancer) present differently with pneumonia…you can’t always hear it.
Paul’s blood work indicated that there was infection somewhere in his body. The chest x-ray revealed that he did have pneumonia. It was mostly in his right lung. He was admitted to Huntsman Hospital to start on IV antibiotics. They also started to give him Tylenol via IV. Paul cannot take anything by mouth, unless it can dissolve under his tongue…this makes it difficult to give him medications at home. I had forgotten (until they brought it up at the hospital) that there are Tylenol suppositories, but Paul was not too anxious to have something put where the sun don’t shine…if you know what I mean!
On Tuesday, February 5th, Paul and I celebrated our 13-year anniversary together in his hospital room. I wish I could say it was the best anniversary ever...I can’t say that, but I am grateful that he was alive to celebrate it with me.
After spending two days at the hospital, I felt like I needed a day to stay home and get things done (laundry, etc.). I was very tired, emotionally drained, and was missing my daughters. I wanted to pick them up from school and spend the evening with them…they have been going to many different friends homes to be taken care of. I felt like I needed to be with them…I needed to be there mommy…we just needed to do something together.
Sophie is really struggling with all that is happening. She yells at us a lot and is just plain difficult. She is very demanding and does not want to cooperate at all. Her little six-year-old brain is just struggling to deal with all this…my brain is having a hard time with all of this, I can only imagine what my children are going through. I am working to get us in some therapy to help with this situation.
Sophie’s best friend has always been her dad. She always wanted to be with him (mowed the lawn with him, watched army shows with him, wrestled with him, watched sports with him…yes, she is a tom-boy). Paul was her everything. After his cancer returned, she would not go near him…hardly even talk to him. It was very heartbreaking for Paul. He cried because he felt so bad.
One day Sophie was sitting on the bed by me. I tried to get her to move closer to her dad so there was room for me. She would not budge. I asked her if she thought she was going to catch is cancer. She didn’t really respond. I explained to her that she can’t catch it. She said she was worried he might catch something she had (there could be some truth in that since she is a germ-a-phobe, but I think she was worried about catching his cancer too). I explained that it was okay to sit next to him. She still did not want to move…fortunately, now, after much coaching and comforting her, she will get closer to her dad and tells him she loves him again. She will sit by him on the bed and watch shows with him again.
Hailey is only nine, but it seems as if she has the ability to look at this through more of an adult point of view. She was diagnosed with Asperger’s when she was six, but to be around her now, you hardly even see that in her anymore. She has a lot of wisdom and understanding for her age. She is handling this much better than we thought possible. She has actually been a support to me. Like the rest of us, she has her moments of absolute tears. Her teacher had to call me the day we checked Paul in to the hospital for Hailey to talk to me. She was crying…she was very worried about her dad. I didn’t tell her he had pneumonia because she knew that her grandma had died five months ago from that. I just said he had a very bad cold and needed to stay in the hospital to get antibiotics (I think she knew that he had pneumonia because she is so smart…she just pretended to believe me that it was a cold).
Let me get back to the story. A couple of my amazing friends knew that I was having a rough day. It was one of those days where you cry and cry. A little while before it was time to go pick up Sophie at school (Hailey would not be home until 4:30 because she went on a skiing field trip with the fourth grade), they showed up at my home with all the makings for a party. There was a cake, cookies, pizza, balloons, chocolate, a movie and several other goodies. They knew I wanted to spend time with my girls and have a fun night together. It was such a blessing. I knew that my girls would be excited when first, I actually picked them up from school and second, they got home to see we were to going to have our own little party.
I was right! You should have seen the look on Sophie’s face when I was waiting outside her classroom to pick her up…she ran up to me and hugged me. Her teacher said he was glad to see me and kind of told me that she has been struggling with being very distracted while at school…she has not been herself. I told him we were going to have our own little party that night. He thought that was a great idea. He even asked if we were going to McDonald’s…my first thought was oh no, why did he say that…now we have to go to McDonald’s because he said that…then I realized I had originally planned on letting them choose what they wanted for dinner (of course, I was hoping it was pizza, but I figured we would eat that the next night)…sure enough Sophie was all over that…McDonald’s it was going to be! I knew Hailey would be fine with that.
When I got Sophie home, she was thrilled to see the balloons and all the goodies. It really was priceless! We had to wait to pick up Hailey at 4:30 and then we would head to Mickie-D’s! I convinced Sophie to help me clean the guinea pigs cage before it was time to go…that is always such a fun task…not…those little boogers sure do poop a lot…not to mention they don’t smell real nice…good thing they are so cute!
When we picked up Hailey we told her our plans. She was excited too! They decided it would be okay to go through the drive thru and head back home to start our party (I must say I was pleasantly surprised with that decision). We had a great time partying together that night!
On Thursday morning I headed back up to spend the day at the hospital. We were hoping to bring Paul home. They said we could not bring him home unless he had a bowel movement…do you know how hard it is for someone to have a bowel movement with a bowel blockage? Actually, Paul has had diarrhea off and on through this whole bowel blockage…only now his bowels decided not to cooperate…he wasn’t having any movement…
Yes, even if you are not eating by mouth, you still make poopies! Your bowels continue to shed and release fluids and toxins all the time...therefore, you continue to poop. If you stop having any bowel movements you are in trouble because that means your bowels have stopped working properly…I won’t bore you will all the medical details, I will just leave it at that.
By about 11:00 a.m. (after Paul finally made a poopy) it was decided that we would get to bring him home. I won’t go in to all the gory details, but it took them until 5:30 to get us released from the hospital. I was extremely irritated because I was hoping to be home to get the girls from school at 3:30 and then get them ready for the daddy-daughter dance at the school that night.
When we realized by 2:00 that was not going to happen, I called my friend (she probably is starting to dread my name showing up on her phone) to ask if she would get my kids. I told her that they had to run one more IV of antibiotics because they were changing his dosing to three times a day instead of two. Evidently, his numbers from some blood test were showing that he was not in the right range for the antibiotics to be as effective as they should be. He is on two antibiotics, Vancomycin and Levofloxacin. He was originally getting one dose a day of Levofloxacin and two doses a day of Vancomycin. They determined they needed to add in the third dose of Vancomycin.
By the time the antibiotic dose was complete and the nurse finally got around to discharging us, it was 5:30. I was pretty unhappy because I knew that I needed to be home to get my girls ready for the dance that was starting at 6:30. They had me ask their grandpa to take them because they really wanted to go. He was very excited to take them for us. I must admit, I am glad that he was willing to go with them, but I was very sad that their daddy could not take them. It makes my heart ache thinking about those things.
When we got home from the hospital, the girls were already at the dance with their grandpa. Once again, my friend rescued me!
The girls were excited when they got home and saw their daddy. By about 9:00 Hailey, told me she had a headache and wanted to head to bed. I went in to give her some Tylenol…the next thing I knew she puked all over the bed…I quickly had her run to the bathroom in case she had more to spew! You would think as much vomiting I am around that I would get used to it…nope, I still get the dry heaves…I am pretty good at being a nurse except for when it comes to vomit…I even dry heave while I am trying to rinse Paul’s barf bowls…I always feel bad when I do because I don’t want to make him feel uncomfortable…especially since he vomits several times a day…
Anyway, I grabbed all of Hailey’s bedding and threw them in the washing machine. She came down stairs and sat on the couch with a bowl in case she needed to barf again. Sure enough she did and she missed the bowl…now I had more jammies and another blanket to wash. I just need to say, this was no ordinary vomit…it smelled so bad!
In the mean time the home health nurse had shown up to make sure we had all the supplies and things we needed. She was kind and started to help me with Hailey, while I was in the bathroom dry heaving! I felt so exhausted, I could not believe that I had another sick person to deal with. Fortunately for us, she was only sick that night. She didn’t go to school the next day, but she was feeling much better.
I give Paul four IV’s of antibiotics a day, in addition to his TPN. We start at 6:00 a.m., 10:00 a.m., 2:00 p.m., and 10:00 p.m. We finish up with the last IV at midnight…head to bed…get up at 6:00 a.m. and start all over again. Each IV runs for about 2 hours.
Last night was not a good night. Paul was very sick! He was also in a tremendous amount of pain. Needless to say, neither of us got much sleep. I am hoping for a better night tonight…we are in serious need of sleep.
Due to the pneumonia, we were unable to do chemo this last week. We have done four rounds and are supposed to do two more before they do a scan. We will go in this Tuesday for our next appointment and hopefully do chemo.
We are hoping the chemo is working, but we honestly don’t know. His bowel blockage is not improving. However, we are not convinced it was being caused by tumors. This problem all started right after he had his biopsy. We saw the scan the week before he had his biopsy and we did not see any tumors where the blockage appears to be. Our hope is that the tumors are shrinking and that they will be willing to do surgery to fix the bowel blockage…but who knows…it may just be wishful thinking.
Today, the girls and I made cupcakes (we were given a gift basket by a friend that had the items to make cupcakes). It was fun to just spend time with them and listen to them giggle. I love it when they are happy!
I have been thinking a lot about the phrase, ”When life hands you lemons, make lemonade.” What does that really mean? I visualize the lemons as things like cancer, someone losing their job, death, unexpected tragedies, etc. But what is the sugar that sweetens the lemonade? After all, lemonade needs to be sweetened with something or it can be very bitter and not really that delightful to drink.
After thinking about this for a while, I have decided that gratitude is the sugar that sweetens the lemonade. If you have gratitude, things don’t seem so bitter in life. If you remember that while you are being squeezed by life’s trials (lemons), you have the ability to be grateful (sugar) and focus on the blessings and tender mercies. If you add enough sugar to lemonade, it can be very delicious.
The hard part is remembering to be grateful when things look so bleak. Lately, I have been realizing how many blessings I have been given.
I am grateful for a daughter who saw that I needed help to get the oil changed in the car because I don’t have the time do it.
I am grateful for daughters who are willing to come and spend time with their father at the hospital when I can’t be there.
I am grateful for friends who run errands for me and bring me the things I need (food, new broom, toiletries, etc.).
I am grateful for the phone calls and messages I receive from friends and family.
I am grateful for friends who shovel my sidewalks.
I am grateful for friends who have helped me with my children.
I am grateful for a sister who helped me to get my husbands anniversary present because I didn’t have the time or the knowledge of how and where to get it (a reel for his fly rod and fishing line).
I am grateful for friends who are willing to drive us to Huntsman if needed.
I am grateful for friends who drop whatever they are doing to come bring me dinner at the hospital.
I am grateful for all the gift baskets and goodies we have received.
I am grateful for all the meals that have been brought over.
I am grateful for each and every kind act that has been shown toward my family. There are too many to mention individually. We have been so blessed! Much love and thanks to everyone!
I just have to remember all the things I am grateful for, so I don’t feel bogged down by everything that is happening…After all, I would much rather have sweet lemonade to drink!
Thursday, January 24, 2013
Where to begin…January 14th, I went in to the doctor with lovely pains in my left side. Unfortunately, I know those pains all to well…my diverticulitis was back…actually, it was probably never completely healed from my episode in December.
At my appointment, the doctor agreed we would use a different type of antibiotic (I had used this previously and it worked well). The reason they don’t give this antibiotic on a regular basis is because it comes in IV form or via injection. There are no pills available to take. He suggested I do the IV, because even though I would have to come in daily for a 15-minute IV drip, the shot was quite painful.
I elected to do the IV. The nurse attempted to put a peripheral venous catheter (tube used to get IV’s) in place. She tried to put it in my forearm…completely missed the vein…then she attempted to place it in my left hand…after much digging around and causing me great pain, she realized that she had just blown my vein…she then moved on to my right hand…the same thing happened…all of the sudden I felt very woozy and light headed…I told her I didn’t feel right…the next thing I know I was waking up…evidently, I passed out…I have never passed out before…that was a strange experience…fortunately, she caught me as I started to fall forward and she laid me back on the exam table.
Needless to say, after having no success at getting the catheter in place, I was given an injection. Yep, it hurt! Because I had to have six doses, I had to go in daily to receive an injection…I was so glad to have that over with…thank goodness it seems to have worked…I am feeling better. In all honesty, I would probably elect to do the injections again if I had to, because it only hurt for about an hour afterward. It beats taking six antibiotic pills a day and it is more effective!
Because I felt woozy for a while, I called my friend to come and get me. I was in no condition to drive home. I am so grateful for amazing friends who help me all the time! She even got to be there to support me while I got my injection…lucky her!
Paul had chemo number two on Tuesday, January 15th. Because I was not feeling very good, our neighbor took him up to Huntsman and our daughter, Sheila, met him there. She stayed with him and then brought him home. Once again, feeling so grateful for the help we received.
Paul actually had been having a few good days…then Wednesday night hit…it was so strange all of the sudden he was so sick…he was so nauseous and started vomiting…he vomited so hard that he yelled out because he said he felt like someone was stabbing him in the right eye. He could hardly open it. He said it was very painful…I called our friend who is a doctor…he had me check on some things and we determined that it was something just to keep an eye on…no pun intended!
With time, Paul’s eye didn’t hurt as bad...when we awoke the next morning I noticed that something looked really funky about his eye…well, not actually the eye itself…it was not bloodshot or anything…his eyelid and the area around his eye was really swollen and droopy…evidently the force from vomiting did something to the tissues around his eye…the doctors don’t seem to concerned about it…it is starting to get better.
Paul continued to be violently ill on Thursday, January 17th. What a sad day to be sick…let me explain why. Our daughter, Katie, has some friends, Justin and Emily, who wanted to help us by getting a fundraiser set up. They had arranged for Peter Breinholt, Ryan Shupe, and Nancy Hanson to perform at a private concert for our friends and family. It was to be held that evening at 7:00, at The Castle Reception Center (which was also donated for the cause). What an amazing fundraiser!
The fundraiser was a surprise for Paul until a couple days before it happened…then we had to tell him about it. He was so excited…he couldn’t believe that they were willing to do this for him. Needless to say, we were both very sad that we were unable to attend this special event…we both cried….we so desperately wanted to be there.
The fundraiser was a huge success. We heard that it was absolutely amazing! We are grateful for friends who recorded it for us and for family who took pictures! A huge thank you to Justin and Emily for getting this arranged! Also, a huge thank you to the performers! What amazing people they are to take time to do a private concert in our behalf! And of course, a big thank you to all our wonderful family and friends who came out to support us!
Paul was not doing much better on Friday, so he ended up at the Acute Care Clinic at Huntsman. Because I had to get one of my lovely injections that afternoon, a friend took him down for me. Another friend took me to get my injection and then drove me down to be with Paul. I was still not feeling 100%.
Paul received a couple liters of IV fluids and was given larger doses of pain meds and anti-nausea medication. He slept peacefully. I was relieved to see him so comfortable. It was determined they are going to put a vent in to Paul’s abdomen to release the pressure from the gasses caused by his bowel obstruction. This vent should help with his nausea and pain. The only problem is we are still waiting for it to be placed. We meet with the doctor who is doing the procedure tomorrow…which means more waiting until it gets placed. Obviously, if we had our way it would have been placed by now!
Paul has been doing better now that we increased the anti-nausea and pain medications. He had his third round of chemotherapy yesterday. Interestingly, last night he started to feel really yucky again and throwing up…now we are thinking maybe this is a result of the chemotherapy…the same time frame as last week…
I am happy to say that Paul only had the one episode last night. He has done fairly well today. He has been very tired because of a new medication they started, but other than that he did better than usual today.
Paul is scheduled to do three more rounds of chemotherapy and then have a scan. If the tumors are shrinking then we will continue…if they are not shrinking…well, I just don’t want to go there right now…
We have been so blessed. My girls have been off track for two weeks with one week to go. My friend coordinated a sign up sheet to have the girls go somewhere every day while they are off track. Thank you to all the wonderful people who have taken our girls for us while they have been off track. I have the best friends ever. This has helped us out tremendously!
Thank you to everyone for all your kindness and concern…the plates of food, the phone calls, the notes, etc. We consider you our angels!