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!
