All Aboard the Crazy Train!

It’s been almost a week since our chronicles of cancer have been updated…did you miss our first-person insight… liberally sprinkled with wit? :o)

Well, now that we have a chance to stop and just take a little breather, I thought I would update you all on this crazy train of a ride. As some of you know, we had planned on taking mom to Virginia this week so she could be with her siblings as they celebrated the eldest brother’s 90th birthday. But just when you think you have some type or normalcy in your life, Cancer has a tendency to slip you a little reminder that although you may be kicking it in the rump, it is not going down with out a fight and if it has to, it will call in it’s friends- fatigue, nausea and infection.

Buckle up kids…this is going to be a long and bumpy blog!

I arrived at Casa de Longo on Monday to see if mom was ready for the trip. We were scheduled to leave on Wednesday morning and return on Friday. When I got to the house, I found mom in bed feeling a little tired and weak. She said not to worry that she wasn’t feeling too bad to fly and her doctor did tell her that it would take about a week for the radiation side effects to clear up. I told her I would check on her in the morning and we would see how she was feeling. The worst case scenario would have been for her to become ill in flight or in Virginia.

The following morning, momisan called in tears and completely inconsolable. She managed to squeak out. “I can’t go on the trip.” And I told her not to worry and I was coming right over.

Once again I arrived at Casa de Longo to find mom in bed and rambling out apologizes for being sick and having to cancel the trip. I told her she did not have to apologize and I know it broke her heart not to go, but until we have a few months of uninterrupted good health, we make plans knowing that they might have to be cancelled. I promised that when she was well enough, we would make this trip up.

I asked mom what she had been eating and drinking and she just shook her head and I knew that was not a good sign. So I got her some juice and made her a smoothie with extra ice cream in the hopes that something in her stomach would make her feel a little bit better. As I sat on the bed, mom took my hand and said that she wanted me and my husband to go on her behalf. I don’t think she actually finished the sentence before I cut her off with an emphatic “No.” With all due respect to the family, there is no way in hell I was getting on a plane and leaving her behind. Of course mom started to cry when I said I was not making the trip without her. She wasn’t upset that I was not going; she was happy that I was staying. It may seem like one of those trick questions to some, but come on…this is the woman that brought me into this world and took care of me for eighteen years. Even Attila the Hun wouldn’t leave his sick momma behind to rob and pillage!

I stayed with mom the majority of the morning and after she had a little bite to eat, she fell asleep and I ran to grab some sammies for the folks. When I returned to Casa de Longo, my brother Andy was there visiting with pop and I proceeded to leave the sammies on the table and walk back to check on mom….and that’s when the crazy train derailed.

I found mom wriggling on the edge of the bed, trying desperately to get to her feet. She said that she just needed to stand up, so I did what I have done a thousand times before and proceeded to help her up. She dropped back onto the bed and her legs started to shake. I yelled for my brother, who showed up just as mom was starting to slip to the floor. We each grabbed an arm and tried on a few occasions to get her up. She was putting up such a struggle to get out of that bed that she was breaking a sweat and it seemed what little strength she had left, disappeared before our eyes.

I remember looking over at my brother and we knew that something was wrong. Andy told pop to take his place and as I grabbed a hold of mom, Andy ran to call the Fire Department. I remember being eye to eye with momisan and I could see the fear in her eyes. The fear of falling and the fear of not knowing what was happening was more than she could stand and as the tears started to flow, I kept repeating, “I’ve got you momma, help is coming.”

Thank God our fire department has a quick response time. While it seemed like an eternity to me, it was a matter of minutes before the bedroom was filled with a small army of reinforcements. The firemen worked quickly to take our places and get mom secured and ready to move to the gurney.

As the guys continued to work on mom, I desperately scrambled across the bed and with tears flowing down my face, ran for the nearest exit. I have tried to live by one rule for the past seven months – not crying in front of mom. But being eye-to-eye with her as I could feel her succumb to exhaustion was more than I could bear. Sometimes, you just have one of those moments. You can’t always control when and were, but seeing how she was in good hands…this seemed like a pretty good time to take some “me” time for a mini-break down.

I had just enough time to compose myself as they wheeled mom down the hall and out the door to the ambulance. Andy jumped in the back with her and I told pop he could ride with me and we would follow them to the hospital. As I heard the doors to the rig slam shut, I remember sinking to my knees with the same inconsolable sorrow that mom had exhibited earlier in the day. Apparently I still needed some additional “me” time to gather my game face before we got to the hospital. And it was a good thing I dropped most of those tears on Middleton Circle, this was just a prelude of things yet to unfold.

We arrived at the hospital in unison and as they wheeled mom into the ER, we calmly marched behind her, reassuring her that everything would be okay. The next few hours consisted of tests and drugs to control her nausea and get her hydrated. She was given a new drug called Phenergan to control her nasusea and after an hour she seemed to relax a bit.

The ER doctor wanted to admit mom and get a handle on the dehydration. So we waited in the ER for hours until a bed opened up. And as we continued to talk to mom, she looked kind of space-out and the nurse re-assured us it was the morphine injection. Another hour elapsed and mom started to make these uncontrollable movements of her lips and tongue and she could not speak.

We called for the nurse, who in turn called for the doctor. We started to rub mom’s hands and head to reassure her that everything was okay. And while we waited for the doctor, I think we were all thinking the same thing – she was having a stroke.

The doctor came in and asked mom to smile and squeeze her hands. She told us that she did not think it was a stroke, but rather an allergic reaction to the Phenergan. The mouth movement is one of the key signs that one is having a reaction. They started to drip Benedryl into her IV to offset the Phenergan. But to be on the safe side, they opted to do a CT scan to definitely rule out a stroke and we would meet up with the neurologist once mom was moved to her room.

After spending seven hours in the ER, mom was finally moved to a room. The neurologist was waiting and she re-assured us that it was indeed the Phenergran and not a stroke that was causing the mouth movement. After getting mom settled into her room, they increased the Benedryl drip and added a bag of antibiotics because mom had a high grade fever. We all scooted our chairs around mom and devised our plan of attack. Even when she can’t speak…she’s still the center of attention! :o)

Since we could not tell whether mom knew what was going on and she still could not talk, we decided not to leave her alone. Andy and pop volunteered to stay the night and I told them I would be back in the morning to relieve them.

I am going to speak from the heart and tell you that seeing my mother with those uncontrollable head movements and inability to speak, was my worst fear come true. Temporary or not, I think the look on her face will haunt me for ever. And leaving her in that condition was the hardest thing I had to do, but I just did not have anything left to give. And the irony of that is my guilt about leaving only allowed me 2 hours of sleep and I was back at the hospital at 6am.

It was time for Andy and Pop to try their hand at re-charging their batteries and as the day progressed, mom’s condition started to improve and we were able to have a conversation. She extended her arm that had the IV line and asked if I thought it was swollen. I told her that indeed it was and I called the nurse to come take a look at it. They checked the line and told us they didn’t see anything and for us to keep an eye on it and let them know if it got any worse. By 10:00am, we were wheeling her down to get a CT scan of her head, abdomen and lower pelvis.

I have another rule that I have adopted since we started this journey – mom never goes anywhere unescorted. If she is with me, (or Andy) I follow her anytime they take her for tests. I find it causes less stress on mom (and the staff) if I brief them on a few things. While she was getting her IV contrast, the technician said that he could not use her existing IV line because it was not good. We asked him to elaborate and he pointed to the swelling and said that’s what happens when the IV line isn’t inserted correctly. The fluid goes into the muscles rather than the veins. I explained to him that two different nurses looked at it and said nothing was wrong and he said they were incorrect. When we got back to the floor, we needed to have the line removed.

By now you have got to be thinking that this is a Chinese fire drill gone completely bad! And for the record, this was not our usual hospital, Medical City.

Once mom was returned to her room, we had the bad IV line removed and we spent the rest of the day waiting for the doctor to stop by with the results of the tests. Andy and pop stopped in for a visit and around 7:00pm, the doctor came by with his findings.

The CT scan showed that there was a mass in mom’s lower pelvis. And as the doctor continued telling us that it could be an infection from the surgery back in August or a side effect of radiation, you could just see the tears build up in mom’s eyes and flow down her cheeks. She started to tell the doctor that she could not handle another surgery and he re-assured her that was not his first option. They would due a CT aided aspiration. They would put mom in a CT scanner so they could guide a needle to the area and basically lance it. Then they would run antibiotics through her and that should clear up the infection and take care of the mass. He also re-assured us that this condition was not uncommon and it was not an indication that the cancer had spread. What probably happened was a little blister formed on the inner abdominal wall and it just kept growing until it morphed into a full blown infection. They are virtually undetectable until they get large enough to actually exhibit signs of infection.

While it was not the greatest news, it was certainly not the worst and mom said we should all go home and get some rest and just come back in the morning. She felt fine and she said if she needed anything, she would ring for the nurse. Since the CT aspiration was scheduled for the following morning, we all agreed that we would go home and let mom get a little R and R, but I volunteered to stay through the shift change. I like to scope out the staff before I go home…sometimes they have unhappy people working in a care giver position.

While we waited for the “changing of the guard”, I dimmed the lights and scooted a chair closer to mom’s bed. I was thinking about the last 48 hours and it struck me that even amid all this chaos, we had time to crack a few jokes along the way. I think that is what keeps us all sane and moving forward. And as I smiled to myself in the dark, I heard a voice call my name.

“Valerie”?
“Yes Momma.”
“At the end of the day, do you think about the time we spend together and replay them in your head.”?
(It’s creepy…it’s like the woman can see into my brain.) :o)
“Yes I do momma. That’s probably why I can’t sleep at night. I can’t shut my brain off.”
“Me either.” The voice continued, “I think about all the times you make me laugh in the day and it brings a smile to my face. And I just wanted you to know that those are the times I cherish the most”
“Me too momma.”

And as the tears streamed down my face, I asked the little voice in the dark if it wanted me to stay. “No” replied the voice. “Go home and sleep more than two hours and come back in the morning.” As mom chuckled, I gave her a kiss on the head and opened the door. And as a beam of light from the hallway went across her bed, I could see her face and a smile that went from ear to ear and I knew our train was back on track.

My brother Andy called me in the morning and told me that our “train” didn’t even leave the station. During the night, one of the nurses had a bur under her saddle when mom questioned why some of the equipment didn’t work and an altercation took place that left mom frazzled and really pissed off.

Andy spent most of the morning tracking down the hospital admin to have what we call a “heart to heart” to make it known that with at least ten different hospitals in the area all competing for patients they better get there act together and rectify the situation. Let’s just cut to the chase and say that when I arrived this morning to visit mom before her procedure, there were a lot of staff members bending over backwards to make amends for the error in their ways.

Mom’s procedure went fine and they were able to lance the mass and we are thankful that the fluid seems to be clear. They gave her some sedatives so she could get some sleep and at 7:00pm this evening we headed home to get a little rest ourselves. The past 48 hours has been hard for all of us. Mom will probably remain in the hospital for a few days so they can continue the fluids and antibiotics that will make her well enough to continue the journey.

As I end this blog, I must confess that the day before mom’s initial surgery in August, we made a pact. She promised to fight as hard as she could and I promised never to leave her alone until this journey came to an end – win, lose or draw. Cancer is a long and arduous battle and there are times when we celebrate victory and other times we feel defeated. There are good days when mom is like a little general and we follow her lead. And there are other days when we have to push, pull, drag or carry her on to her next battle. But I promised her that I would never leave her behind.

I think that’s why I am so hard on myself at times. I always think that there is something more that I could have done or something that I should have seen before it got to a certain point. But the truth of the matter is that as much as I would like to think that I (or my brother Andy) could some how meet all of mom’s needs, twenty four seven, it is just not humanly possible. We can’t know everything or predict what tomorrow will bring. There just comes a time when you are just physically exhausted and emotionally spent and there is no shame or guilt in that. Sometimes even the most tenacious caregivers need a little help.

So thanks once again to The Colony Fire Department, The Colony Police Department, to family and friends for their love, support and prayers…and most importantly, to my husband. It is because of his love, support and understanding that I have the ability to embrace my alter ego…ChemoSabe.

I will post additional updates when I can and please continue to keep my family in your prayers.

I am off to recharge my battery…

Val