Hard Road Ahead

I have been home 22 full days. That is almost a month of being home and unable to talk to anyone for too long and it has driven my mind up the wall and back. Trust me that has been no walk in the park for my parents or my husband to care for me during these few days on this long road to recovery. Yes, I have had two sessions of speech therapy at home and I have a valve I can and try to use to speak with, but some days I just don't use it. I don't use it because it takes a lot out of my lungs and I also want my voice not some breathy voice. I miss singing, or being able to sing to my cat, who has been hesitant to come near me for too long. I was gone 40days, I abandoned her and she is making it clear to me she is pissed. Not only is the cat pissed, my horrible resting bitch face (which makes me look sad and gloomy and angry) makes everyone assume I am feeling that way and I try to talk and just make these huffing noises and flap my arms around (i use my hands a lot when i speak), so yes I guess I look like I am in distress. I have learned to try and improve my face and not use my hands to speak anymore. I have been able to have short conversations with my Passimir Valve (talking valve), but it needs to be quiet and I need to be calm and distractions need to be gone, so no tv no phone.

Being home has not too bad, but the road to getting my voice back has been tough in the hospital, but only got harder in the real world when I have to put even more work in and I am faced with real life challenges that never were challenges to me as an adult, maybe as a toddler, but I am 33 and I can't walk up many steps using both legs without support. That is my reality and I spend most days doing simple workouts to build strength so I can get in and out of my house.

I shed the cane by day 7, so at home I walk. In my only public activity, which has been going to doctors, we use a wheelchair, but I have an will walk if I can. On the other hand having a wheelchair is great because I walk slow and have to have two people drag oxygen tanks and traech-gear with you everywhere. You see that TWO PEOPLE. I would not be able to get anywhere without two people. I have an entourage, someone pushes me and carries stuff for me & the other person has to carry all my medical gear. Downside to the wheelchairs is that they cause my bed sore pain. I got this awesome wound/sore in the ICU within days because my bed sucked and no staff thought to move the shrinking in size, unconscious patient. I guess they thought I was not going to make it out of there. Who knows, but I hate pain. Who likes pain?? NO ONE.

Most of these days I am alert and attentive, but I speak via notebook and hopes that you might be good at mouth reading. If you call me, I will not answer, someone from my entourage will speak for me. If you want to speak with me, which seems like the same few people have outreached me. This number gets less and less the sicker I get. I get it, my disease scares you, but imagine how if feels if you were sick and I just dipped off the face of the earth and never asked how you were doing. It would hurt, make you feel alone, and it really highlights who really is there for Kyle and myself.

All signs point to Ixempra working. These are the reasons  to get a little excited that a treatment is working and may help me get strong and back to me again. First good thing is I have Oblina Deux (my second PleurX cather) in my right lung and she has gone from draining 500mL of cancerous goo to 200mL of cancerous goo every other day. I even graduated to getting it drained twice a week. I know from the PleurX (Oblina) I had in 2015 my lung drained less fluid and the cancer melted away.  I have gone from needing 5L of oxygen to 3-3.5 L daily within 3 weeks. My recent chest x-ray on the 19th showed improvement since my last chest xray at the hospital. these changes all happened after a third dose of this chemotherapy.

Medical Updates have been good. My oncologist has moved from NYP-Cornell to Sloan Kettering and I followed her. I was too sick to make the trip into NYC to see her post surgery and she had me see an oncologist at the Sloan Kettering in my town. We also arranged to have my scans, labs, and treatments done there with this doctor & that I will go into NYC 1x/mo to see her & my Brain radiation team and/or my pulmonary doctor whom are all at NYP-Cornell. The idea was to reduce my trips into the city because I am oxygen dependent and the trips are long all day processes.

Since my last blog post, I had another dose of chemotherapy. I learned that this chemo is sneaky and gives you nasty nausea on day three/four. We hopefully will fix that by having me take Zofran for the 4 days following chemotherapy. I will let you know after the 30th (dose 4) how that goes. My oncologist said her goal is to get me fat and clear up my lungs. I have my first CT scan since the one I had in the ER this Wednesday. Please cross fingers, toes and even your eyes if you got to that the scans are good. These scans determine if I stay on Ixempra.

I also saw my Pulmonary Team and had a good report from the doctor when he saw my chest Xray and gave me an exam. I can schedule the trach removal if I am off the ventilator for 2 weeks without any problems and my CT exam this week shows improvement that was seen in the chest Xray. I was told that I need to be off of the Ventilator 100% for a few weeks before we schedule closing the trach. Right now we have been weaning me off of the vent since I got the trach in the hospital. I was able to go a full night without it once, but have been most comfortable being on it for 3hrs and sleeping the other 5. I heard that closing of the trach is possible, so my goal is to get to sleep on time and to work with Kyle and my medical team (who suggested the weaning schedule we have been using) on getting me off this vent. I hope I can do it. My lungs are weak from the years of having cancer in them and lungs do not rebuild themselves like starfish. They need time, medicine, and rest to heal. We also discussed possible removal of the pleurX drain because its draining less with each chemotherapy.

I also had the egg that grew in my belly in the ICU drained 1x outpatient. It was drained 2x in the hospital and 2.4L of ascites came out. I had it drained two weeks ago and only a tiny bit of fluid appears to return. It looks like that is resolving itself also.

I am still dealing with swollen feet, a swollen left arm, and swollen ankles. This all happened due to my lack of appropriate nutrition in the hospital and lack of movement. I met with a Nutritionist through the VNA. They helped me make sure I get enough protein and fluid, which are important for getting the fluid out of me.

I still have the VNA coming. They have been sending someone everyday since I have been home (minus a few weekends). It has been helpful to have someone help me or show me how to get stronger and help myself here at least once a day. I get the most benefit from Physical Therapy and Occupational Therapy because I want to get back to doing things on my own and having the endurance and strength to do day to day chores & get out of my home on my own no problem.

I still have Kyle here, home with me, nursing me everyday. It takes a lot out of him. His coworkers have been incredibly supportive like always and his family has also been quite helpful for both of us. We appreciate it. He told me a few friends reached out, but he does not have the energy to engage in much because he is tired and has been consumed with worrying and caring about me. THIS has taken so much out of the most amazing man on this planet it pains me. I hate seeing him tired and exhausted all at the sake of me. He loves me so much he puts everything aside. Not many men can do that but he can. I want this man back as my husband. I want to get better so he doesn't have to be my nurse or someone find us a good in home nurse to take the responsibility from him.

My parents have given up their lives to be here to clean, cook, keep me company, and help Kyle take me to and from doctors appointments. It takes a lot out of them. In no way should they have to take care of their 33yr old daughter. The situation should be reversed, but it is not and they are here doing what any good parent would do. They are helping me not go insane and helping my husband not feel like he has to do everything medically and environmentally (cleaning, cooking, laundry  etc) for me. I just started to have the energy to wash my own dishes and put them in the dishwasher. I try something small daily to add to tasks they were doing for me that I can start to do on my own. I try and I will get better with Kyle and my parent's help.

Ultimately medically I am doing well. But because I am being kept so active by the VNA and doctors and doing doing simple Physical/Occupational Therapy exercises. You might find that I am even more inattentive because I am tired, in pain, and should be resting, or enjoying myself so I HEAL. Working hard, resting, and using all the resources I am given to use to get better will help me heal. I just need Ixempra to keep kicking cancers butt so my body has the strength to keep doing this.

I want my voice & strength back. I want my husband back and retire his stint as my nurse. I want my parents to go back to enjoying their own lives. Honestly just miss singing to my cat. It brought me so much joy. I think she misses it too, but she knows mommy is sick and that is probably why she stares at me and is unsure of what to do..... or maybe its my bald head. Who knows.

More updates to come when the  CT scans come in.