I had my first round of chemotherapy on December 30th and faced
the following weeks filled with nausea, vomiting, and severe abdominal pain and
inability to keep any liquids or solids down.
I ended up being so dehydrated and sick that after a few visits
to the ER and the nurses at the ER unable to access any of my veins for an IV. In desperation one night I was taken to Huntsman's Acute Care clinic. They closed at 6 pm and my home health nurse told them we were on our way and that I needed to be seen that night. We had 30 min to get their on time and Mom sped to Huntsman with 5 min to spare. I was raced into the Hospital by wheelchair since I was too sick to walk and just as we entered Acute Care the nurse told me that we were too late (it was 6 exactly) and they couldn't see me tonight. I was so frustrated as I was so ill and could barely talk or keep my head up as I vomited over and over that night. Frustrated, we were told that the only place to go was to the U of U's ER.
We rushed down their and waited at their ER. This was one of the most disgusting ER waiting area/hospital and filled with lots of dirty homeless people. Due to me being immuno-compromised, I sat in a wheelchair crammed in a corner of the waiting area trying to cover my face to avoid getting exposed to anything. It was an interesting experience to watch the homeless/ suicidal patients walk in and go straight back to get checked out, while I had waited over 2 hours to be seen. Finally, I was called back and evaluated for severe dehydration, nausea/vomiting and was admitted to U of U. All the beds were full so I had to wait another few hours to be transported to the ortho unit since that was the only open room for the night. Finally at midnight I was able to go into this new room but ended up only staying for a few minutes. Luckily someone over at Huntsman's impatient was leaving which left an open room for me. I finally was able to settle down and get all my luggage off my lap and out of the wheelchair. The night was a blur and I was so sick and exhausted from being tossed around from place to place I didn't know where I even ended up. I was on the transplant floor for cancer patients and had a large room which was nice. I ended up staying inpatient at Huntsman for over a week from January 15-23rd. Luckily I have an awesome family who made posters to encourage me to stay positive as well as having Aubrie and Brynnley come visit and play with me.
I continued to struggle with the severe abdominal pain caused by the cancer wrapping around my bowels while in the hospital and tried many combinations of pain meds, even the strongest ones with no relief from pain. I ended up meeting with the pain specialist team of doctors and it was suggested to have an interthecal pain pump placed in my abdomen that goes directly to my spine. This was quickly talked about and one positive was that the dose and therefore the side-effects would be much less since it goes directly to the spine. The pump itself looks like a hockey puck and is huge! It makes a huge lump on my left stomach area and I can feel it every time I move. The pump is filled with dilauded and also allows me to push a button to allow a bolus dose when my pain is bad. The pump is not comfortable at all and I hope it gets better! Unfortunately, I was warned that I am in the high risk category to have spinal headaches for the week following surgery and of course I experienced this awful pain. The spinal migraine lasted about 10 days and the pain significantly increases any time you sit upright and difficulty with light sensitivity.
A few days after having this surgery I returned to the hospital
for my 2nd round of Chemotherapy on January 27th. I struggled to continue to fight the fight
every day even if it was trying to walk around the house. I continued to have no energy as my weight
dropped 30 lbs since December from not being able to eat. I went to the ER
multiple times to get some hydration by IV. Unfortunately, my veins in my
arms/hands were so scarred that none of the nurses could even get a needle in
me, despite using an ultrasound machine. I ended up in the ER 4 times ( Feb 2, 4, 5, 9th) due to the pain and dehydration. I had been avoiding having a chest
port placed this time with chemotherapy and was hopeful I would only need a few
pokes a month. I decided that it was time for me to have another port placed if
I was going to continue chemo and needed the hydration to stay alive.
The "Red Devil" chemotherapy:
Following my 2nd round of chemo, I have not been able to return to driving yet, still can't eat, and having to live at my parents for help. The nausea, despite the medication help, seems to last about 2 full weeks after chemo. Also the other side effects that I have had are vomiting, chemo brain fog, severe dry hands and feet that are cracking, and loss of taste- metal taste instead.
I was scheduled for my 3rd round of chemo Feb 24th
but was too weak to even walk or talk and told Dr. Werner that I was taking a
break from it. Instead of chemo I had surgery that day to place a new chest port that
gives direct access to my heart. I am
still torn and deciding if chemo is really the right option for me at this
time. My quality of life has changed quite a bit but it has also helped me to
see the little things in life that are truly of importance.
I am so grateful that my parents have allowed me to stay at
their house since all this started so that I can get the 24 hr care I need. I
am a very independent person and don’t like asking for help. There is no way I
could have lived through the past few months without their constant love,
support, and hours spent taking care of me. It has been a blessing that Aubrie
and Brynnley can come visit me and sleep over at my parents and brighten my
day! Their little voices, gentle hugs and kisses and their excitement in life
is what keeps me fighting each day.
