We got here less than an hour ago. She’s sleeping so I’ll post this quick update. Sorry about the format (or lack thereof) but I’m composing this thing with my Blackberry and, as I’ve said previously, I got big fat fingers.
Satomi had serious heartburn/stomache pain this morning-in the upper stomach area. She called me to come home just after I had just left for work. I’d assumed it was due to the oral chemo drugs so I called our Oncologist. The doctor said the pain is not typical for these drugs. Satomi had taken Prilosac and Tums tablets already but it just made her barf.
The doctor recommended a liquid antiacid for immediate effect. If that didn’t work, we would have to go to the ER to deal with the pain. I rushed to the store. I returned 10 minutes later. The pain was worse and had spread to her entire abdomen. She took a few gulps of Ultimate-Strength Maalox and waited for relief. After a few minutes there was some limited improvement in the upper stomach area but the majority still throbbed in pain.
I got her dressed and called the Oncologist again. I updated her and asked which ER would be best. Saddleback already had her records and we’ve had lot’s of experience there so I got her in the car. The drive went very quickly but she was in terrible pain-She moaned and squirmed in her seat. I felt so helpless. My stress level was overwhelming.
I stopped in the ER circle and ran inside. I told the lady at the desk of Satomi’s pain and urgent need to get in. She pointed at the wheelchair in the corner. I got Satomi and rolled her in. The desk lady gave us paperwork to fill out. I got mad.
Me: “She needs to see someone now, she’s in incredible pain! What the hell? Would we have to wait if she came in ambulance?”
Desk Lady: “Of course not, but you bringing her here in a car is your decision.”
Me: “Alright, I’m calling one now.” I start dialing 9-1-1.
Desk Lady: “You can’t call one from the waiting room!”
Me: “Why not? My wife needs help now. When she says she is in level 10 pain, she is not exaggerating. She is in the medical field and knows what that means.”
Satomi: “Calm down. We’re here now and that’s what counts.” She stands up out of the wheelchair and tries to walk off the pain. Satomi barfs into the trash can near the front desk.
The triage nurse comes out to the waiting room and brings Satomi a plastic bin for any other barf episodes. We present Satomi’s entire history in less than a minute. She gave us the same “take a seat and we’ll call you ASAP”. I got mad again.
Me: “What?! She’s in level 10 pain! She’s in the medical field so she knows what that means.”
Nurse: “What does her being in the medical field have to do with it?”
Me: “…it means she’s not exaggerating. She’s in serious pain.” I wanted to kill that bitch.
Satomi barfed in the trash can again. I told both of them: “It’s going to get worse”. The nurse walked us back to a treatment room.
We changed her into a gown and got her on the table. We waited another long 20 minutes as Satomi continued to moan in pain. I started to get mad again. I actually thought about who could bail me out of jail after I beat on somebody. Mid-moan, I asked Satomi if she wanted me to cause a scene. She stopped me and urged my patience-Amazing coming from someone in level 10 pain.
I still went out to the nurses station: “How much longer until the Dr comes?”
Apparently he was working on someone with a heart-attack. I continued to emphasize the severity of my wife’s pain. Strangely, I don’t care about anyone else.
The doctor finally comes and give him the low-down on history and symptoms. He has a lot of information to put into his portable computer station. They draw blood to check vital organ function and give her medication for the pain. After a restless hour or so, she falls asleep. I am so relieved that she is no longer in pain.
The blood test results came back and all her vital organ functions are fine. That is excellant news. The doctor’s theory is that the pain was caused by severe acid reflux due to the vomiting associated with the initial heartburn. The initial heartburn may be caused by the oral chemo drugs or the Decadron she is taking for brain swelling post-Cyberknife.
Given the potential cascade of problems, it is important that we monitor the initial onset of heartburn especially while she remains on these drugs. She will be taking a daily dose of over-the-counter Prilosac to reduce stomach acid and keep a bottle of liquid antiacid close by at all times. If heartburn becomes more prevalent, the Oncologist will prescribe a maximum dose Prilosac.
The doctor ordered another bag of saline and an IV dose of Decadron. If everything goes well, we’ll be out of here in the next few hours.
We’re still learning about the side effects of the chemo as well as the long-term effects of the Cyberknife so we have to remain vigilent. This whole ordeal upsets me. Besides the obvious issues I spoke of above, I am concerned of the future. I need to better plan our contingencies if this or other problems occur. As I’ve written elsewhere, it’s difficult to predict what could happen over these next months.
Satomi was discharged and we got home by lunchtime. Our bedroom was a disgusting mess from this mornings ordeal so I put Satomi into Jillians bed to rest. She was fed and, after a few hours, doing quite well.
Everything is back to normal.
After Satomi’s 4th Cyberknife session yesterday she was doing quite well. A bit dizzy, fatigued, and a stiff neck-Normal for her treatment. We all started to take things for granted and planned for her to go to work today. That was a mistake.
She called me in the late morning and needed to go home. My Mom picked her up and got her safely into bed. I did not realize until I returned home later that afternoon just how bad it was. She was getting dizzier, even when she sat in bed. She had trouble walking to the bathroom and was nauseated.
I called the Neurosurgeon’s office late in the afternoon to get his opinion but didn’t get a call back right away. Satomi fell asleep so I left it alone for the evening.
The next Saturday morning she was so much worse. She couldn’t roll over in bed without getting very dizzy. She was dizzy with her eyes closed. She was nauseated and could not stand up-let alone walk. I worked the phones.
I had planned to go to a friends bachelor party in Vegas-driving up on Saturday morning and returning Sunday morning. I called the best man and sent my condolences.
After about a dozen calls to various doctors, I first spoke with the Neurosurgeon on call. He was not familiar with Satomi’s history. After hearing the severity of the symptoms and the tone of my voice he recommended an ER visit. I questioned his recommendation and it was almost entirely based upon his lack of familiarity with the case. He recommended that I speak to the Cyberknife Radiation Oncologist (RO).
We should have taken those steriods that the RO offered on Thursday. I called the RO on-call three times before getting a response-I was frickin’ PO’d. I repeated the symptoms and summarized history to the RO. I also indicated that our RO offered steroids on Thursday. He called the pharmacy and ordered us a bottle of Decadron.
At this point Satomi had a physical rating of 1 and an emotional rating of 2. She felt like she was dying and was obviously emotional. I was convinced that it was a brain swelling issue so I took comfort in the just prescribed drugs. My emotional state was a 3.
I rushed over and got the drugs. Upon my return, Satomi took the pill and took a nap. I sat nearby and listened to her sleep.
I had packed for the overnight trip on that Saturday morning and had my bags stacked near the front door. It was already early afternoon and I had mentally accepted a quiet evening at home in lieu of a drunken rampage through Vegas.
Approximately an hour later, Satomi awoke from her nap. The change was drastic. She was only dizzy a little bit and she could walk without tipping over-She felt so much better. Everyone was so relieved. I’d estimate her physical rating increased from a 1 to a 3; Her emotion rating went from a 2 to a 3. No more talk about dying. She was OK so my emotional state was a 4
After some urging, I threw my bags in the trunk and hoped that I could make our dinner reservation. But that’s another story…
We spoke to the Cyberknife doctor and explained that she was a bit more dizzy than before. He indicated that the course of treatment is a round of steriods-Decadron or similar. We are very familiar with the nasty side effects so we have been reluctant to use steriods. Things aren’t so bad so we’re going to pass on them
I just left Satomi on the table in the Cyberknife room. I have a routine before I leave the room: Check that her neck sits on the table support straight and square; Her mask is flush and tight. I put her shoes and glasses in the same spot on the table and tell her I love her. 30 seconds later, I’m out of the room and the technician starts the session.
After I leave her, I typically spend an hour or so in the Fashion Island Barnes & Noble-you know, just browsing. This time, I actually had things to do. I drove up to the Best Buy near South Coast plaza. I need a radar detector. I’ll explain why in a seperate post.
An hour and a half passes very quickly and I actually come close to buying a detector. I realized that I could get a better deal at my old workplace-Newport Autosound-so I just leave. I rushed back to Newport Diagnostics and waited the last 20 minutes in the waiting room. She was in the same mood as when I left.
She craved a steak so we found an Outback steakhouse. Newport diagnostics is almost across the street from Flemings Steak house but we were both a bit under dressed to go there. After dinner she wanted dessert so we rushed over to Sprinkles Cup Cakes to pickup a half-dozen Red Velvets. Yummy!
Her physical rating is a bit down at a 2 but her emotional state is a bit higher at a 3; I’m the same.
The Tykerb people keep calling.
I always answer but they aren’t authorized to talk with anyone except the patient. Unless, of course, they have permission. I understand the reasoning but it’s frustrating nonetheless.
When Satomi get’s around to calling them, as they always request that she do, there is a voicemail or message or something. So we have to wait for them to call us.
This whole situation bothers me. I mean, this was the drug that was going to keep the Mother of my Children alive. It took almost a week for wifey and Tykerb to speak.
Their “Education” representative reviewed the semi-complicated mix of Tykerb and Xeloda. We had already reviewed the paperwork so it wasn’t a surprise…
- The Tykerb dose is taken on an empty stomach once a day. According to Tykerb, an “empty stomach” means an hour after or an hour before a meal. A single dose consists of 5 big ass tablets that Satomi has to swallow individually. She opts to take them before bed. The Tykerb is continued daily until the doctor says stop.
- The Xeloda dose is taken with meals but twice a day-Breakfast and Dinner. The dose is only 2 pills and they aren’t too big so Satomi can swallow them just fine. The Xeloda is taken on a two-week-on and one-week-off cycle.
That’s 9 pills a day.
A lot but let me first say that Satomi is fine. There were some tough days in there.
The predominant issue with the posting gap is my habit of re-reading my writing sometime later as a sanity check before I post them. Most of the time, I can re-read my work in the parking lot during Cyberknife or in the evening. These last few days were a bit of an overload for me.
I have a lot to say but want to do it in some rational fashion; Some of these posts I just couldn’t rush. Hence, no posts since last Tuesday.
So read on:
…beginning her regimen of oral chemo,
…her 4th Cyberknife session,
…her day with a physical rating of 1,
…my 93 mph traffic ticket,
…a day off with the fella’s in Vegas
Satomi's Cancer Blog 