Another phase down, but definitely not without consequences. This phase was the last phase before maintenance. By maintenance I mean the last phase of treatment that she will remain in for the remainder of time she is to receive chemo. She still has 1 1/2 years left. I dreaded the phase she just completed more than I can say. I remember standing in my garage sobbing to my mom and mike that something bad was gonna happen and that I had a really bad feeling about it. She started off right away with spinals, steroids, dox, vincristine, and peg, all of which are chemo's except for the steroids of course. We started this phase right around Christmas time which was a plus because Sadie was able to stay home for Christmas before the chemo really started knocking her counts out. I am so grateful for that, that was all I wanted for Christmas and I got it. She had an amazing day and do I need to say that she got everything she wanted and everything she has probably ever asked for in her lifetime. This bliss was very short lived. Days later the chemo started taking affect and the steroids kicked her ass. Dox is the chemo that affects the heart, vincristine causes nerve damage, and steroids weaken your bones. Sadie started complaining of joint pain and eventually reached the point where she couldn't walk because it hurt so bad. Her heart rate elevated to the 150's-160's and that was at rest. When she was awake, it would elevate to 200 and sometimes above. Normal for her is 80's. She started shaking so bad that she couldn't feed herself or hold anything in her hands. I called the docs daily for a good week and a half and they kept telling me see was fine. I have to get the OK from them to bring her in and they wouldn't give it to me. I was dosing her with oxycodone every four hours, and it didn't even touch the pain she had. Finally, one night she looked at me and said I want to go to the hospital. That scared me because Sadie hates the hospital and would never elect herself to go there. I was on the phone with the doc only an hour prior, but I called her back and said I'm bringing her in so be ready to hear from the ER doc when we get there. She annoyingly agreed. Thank god we brought her!!! Counts were drawn and I asked for a BMP to be drawn as well. The ER nurse tried to tell me it wasn't necessary but I argued that it was. A BMP is a measure of electrolytes in the blood and it also evaluates organ function. They reluctantly ran one, and I bet my ass they are glad they did. Her levels were so off that they thought there was an error in the lab. They collected more blood to send off to have another one ran. That one came back the same. The most concerning of these was the sodium. When your sodium is low, you run into severe life threatening problems. Sodium issues are usually a result of something in the brain. She was going to be admitted for that alone, but other issues had to be addressed as well. The ER doc scheduled an emergency MRI of her lower back. Lab technicians had to be called in from home at 2 in the morning. That's a red flag to me that he thought something was seriously wrong. She presented with excruciating back pain, uncontrollable shaking, numbness in her legs, and a fucked up BMP. These docs are thinking pressure on the spine causing swelling in the brain from an unknown source. HOLY SHIT!!!!! WHAT?????
Panic mode, I couldn't calm myself down, my world once again came crashing down around me. At 4am Sadie was whisked away from me and being sedated for the MRI. Putting her out with drugs is really hard for me to accept yet it happens at least once every three weeks and sometimes weekly. You would think by now I could accept it, but i cant. So...... she gets out of the MRI after waiting 2 of some of the longest hours of my life, and now we have to wait for results. At this point, we are still being cared for through the ER cause they cant assign her to a floor without a diagnoses. Yes she is a cancer patient, but the cancer floor would not be suitable for the problems they were expecting. Results came back, and this is what they were: Bones were very thin and porous. They are frail and weakened. Her bowels and intestines were SEVERELY backed up. Vincristine causes constipation and she received it three weeks in a row. Good news, No tumors or growths on the lower spine. Yay!!!!!!! We were sent to the fourth floor to control the sodium issue and the pain, and to figure out what the shaking was a result of. By now its 7am, time for bed.
A few hours later her doctor comes in. I said, "OK so we know that there is nothing on the lower spine, but what about the brain?" This is how BITCH she is: She tells me that she doesn't doubt that there is swelling in the brain but she will not order a scan for it unless Sadie starts having seizures. She then tells me that Sadie's shaking has to do with vincristine overload causing nerve damage. I told her MONTHS ago that Sadie was having issues with the vincristine. She was supposed to decrease the dose to prevent this predicament that we are in now, but she never did it and told me again that she wont unless Sadie has a seizure that causes damage. If she seizes and doesn't have any ill effects from it, she will still keep going. Upon talking with another doc, that dose should have been decreased a long time ago. Sadie was put on a nerve med for the pain and the shaking, its also an anti-seizure med. In addition to this, a bladder infection was discovered in Sadie's urine culture from the ER. Four days prior in the Costas center on one of her treatment days, I begged them to take a urine sample cause she was complaining of burning when she went pee. Again, it wasn't medically necessary in their eyes. A bladder infection to you or I is no big deal, but to Sadie or other cancer patients it can quickly spread and even turn into sepsis. There is no telling how long she had this.
After a few days in the hospital, sadie was released to go home. That hospital stay was very hard for me. It was the very first time I allowed Sadie to have morphine. I hate morphine because it shuts of sensors in the brain that tell you to breath. This is mostly dangerous during sleep and because of this, she was hooked to a monitor her entire stay. I swore I would never drug her with morphine, but her pain was awful and the oxy wasnt working. She hadn't slept but a few hours each night for over a week. She cried out in pain constantly. Loud, agonizing, heart wrenching pain. To give you an idea of how bad the pain was, they were dosing her every three hours with the morphine, and had her on a continuous morphine drip in between doses and it still didn't alleviate her pain. She was seriously fucked up. Im still pissed off that they wouldnt listen to me sooner. Some of this could have been prevented if they would have just listened.
I was terrified to take her home, and Sadie was scared too. When we got released she kept asking me if she would be alright and if I could take her pain away at home. I told her I would die trying. She came home on all sorts of shit. Six different meds dosed several different times throughout the day. Pain management alone was a challenge, much less remembering all this other shit that had to be done. With the help of those that love her most and long sleepless nights, we did it!!! We managed the pain around the clock, cleared the bladder infection, cleared her bowels and intestines, and gradually weened her off some of the meds. Unfortunately, this part of the phase was the easy part.
