Ok, well, I finished my second round of chemo today. The oncologist ordered an IV nausea med infusion that lasts for 3 days. It worked great til it wore off tonight. However, I will take it as a win because I have been able to drink and eat small meals/snacks which I was not able to do after the first round! 

My next round will be a long, hard day. Today they scheduled me for lung biopsies due to the 2 new lesions, one in each upper lobe. The oncologist needs to see if it is mets from the colon tumor or if it's something different. I am praying they find nothing but realistically, I know it's likely mets and will mean yet another chemo med gets added. 

This round kicked my in a different way. The nausea was much better controlled. However, the neuropathy In my hands.....sweet Jesus, it made me sob. My hands felt like they were being electrocuted and then the fingertips just tangled and burned creating excrutiating pain. My hands cramped for 30 mins. I couldn't feed myself, hold a cup, brush my teeth, nothing. My son accidentally brushed one of my fingertips lightly and I bawled like a baby. There is no way to describe the unrelenting pain. I got desperate and took what I had available: 2 extra strength tylenol and one muscle relaxer. That knocked it down to light tingling for about 24 hrs. Now it comes and goes in spurts, same intensity, just shorter duration. I wouldn't wish this on anyone. 

I have yet another med to pick up tomorrow to control the neuropathy. My med bag now looks like a mini pharmacy. It is quite disheartening. I went from working 70 hrs per week between two jobs I love to hitting a brick wall at 80mph and life stopping as I know it. That's a hard pill to swallow, just watching the life you had and loved get ripped out from under you. Some days I handle it better than others. 

With this round my labs showed my white blood cells tanked. Evidently this is what chemo does. It kills everything, even the cells designed to protect you from infection. Today when I went to get disconnected from my pump I also had to recieve a neulasta shot, in hopes it helps my bone marrow increase production of white blood cells. I need this to protect me from additional illnesses and infections. 

I am still exhausted. This chemo takes literally everything from you. It is not an easy road. I don't know why I have to walk this path but I am going to fight as long as I can. 

Please pray for strength, relief from pain and nausea, mental and emotional strength and finances to cover the medical bills that are quickly building. 

Thank you for reading and following my journey. 

Susan

I had my port inserted and my first chemo last Wed. I didn't know what to expect. I did well through the infusion and the 2 days home with the pump. However, Fri night at work I became really ill and nauseated and had to leave early. I stayed really nauseated over the weekend, weak, shake and had zero appetite. 

Sunday evening I had an episode of rectal bleeding that actually alarmed me. I called the after hours number and the nurse practitioner asked me to go to the MD Anderson Acute Cancer Center (ER) for further evaluation. I got here and things were done rapidly. The ED doctor said he was keeping me for observation after labs and CT came back looking good. 

I was admitted to the floor this morning. I have spoken with Surgical Oncology twice, Medical Oncology and GI twice. It was decided that a colonoscopy was needed to determine the source of bleeding. Best case scenario is the colonoscopy is clear and the blood thinner I am on needs the dose adjusted. Worst case scenario is a lower GI bleed, the reattached colon to small intestine is leaking or a new tumor is present. 

If you need a way to torture someone, make them drink this prep. 💀💀 Sweet Lord, if the cancer doesn't get me this prep will. LOL 

Please pray for answers either way tomorrow. I have received amazing care here. I know I'm in good hands. Just another speed bump to get over. 

Yesterday was a big, long day at MD Anderson. Lab work, EKG, then port placement followed by first chemo treatment. I was anxious about  the port placement. My pre-op nurse, Melvin, was awesome and reassuring. The entire Interventional Radiology team was amazing. My anesthesiologist had a very calming manner and voice which helped a lot. It was done under conscious sedation; I wasn't completely under but not awake either. I remember waking up groaning several times to see his face near mine under the sterile sheet, calming me down and reminding me to breathe.

I was very groggy after the procedure so a transporter had to take me to chemo in a wheelchair. Mom was a trooper. She came along for this at-the-hospital-before-dawn adventure and walked all over that campus following me. A short wait in the chemo lobby and we're brought back to a room. It had a hospital bed and I was so thankful because I was exhausted. My nurse, Miko, was great. He was calm, informative and had a great bedside manner. He explained every infusion I was getting before he hung it. I was also starving because last I ate was noon the day before and I was nothing by mouth after midnight. Lord have mercy. Mom bravely embarked to find a cafeteria and finally returned just before I was going to send a search party. I devoured that meal. lol 

I slept during my entire chemo treatment. I was wasted. Chemo went well in the hospital and I came home with a pump to finish the last 46 hours of chemo at home. I return to the infusion center Fri afternoon for them to disconnect my pump. Now, coming home I found I already have side effects from chemo; both of which I had read about and knew were most common. Cold sensitivity: I took a sip of my ice water and my tongue was tingly and felt like razors in my throat. Holy crap. It also affects my fingertips. I also noticed neuropathy as well. It is painful and was making it difficult to do things. I knew these were likely but I had really hoped I would make it to the second infusion before they started.

Next steps:

1. Tyler and I will take a class how to flush the port, disconnect the needle and change the dressing so we can do it here at home instead of me having to go back to the infusion center every other Fri after chemo.

2. My regular chemo schedule is every other Wed for a total of 12 treatments. 1 down, 11 to go. 

Extra prayers as I go through these treatments and deal with these side effects would be greatly appreciated. I am exhausted but I will be darned if I don't give a hell of a fight.

Also, the new CT scans last week showed 2 new lesions in each lung upper lobe. They are definitely metastasis. So, my new official diagnosis is stage 4 colon cancer with mets to the lungs. Please pray for my children and family as they are scared. Pray for comfort and peace for us all please.

After such a great day with MD Anderson yesterday, the night took a scary turn. The new oncologist ordered CT with contrast of my chest, abdomen and pelvis during my appointment, which I did. 

I forgot to take my phone off do not disturb after the appointment. I made it back to my parents house and had dinner, exhausted from an all day ordeal. I got a notification through mychart I had a message. I figured it was about chemo next week. 

It was not. 

It was my oncologist trying to reach me. He said he'd called several times but unable to reach me. He wrote that the radiologist called him to report I had a "fairly good sized pulmonary embolism in the right pulmonary artery". I had a life threatening blood clothes and needed to go to the ER immediately. 

I pack a bag and my sister drives me to my ER. After an lung angiogram is completed, the ED doctor tells me I actually have several small blood clots in BOTH of my pulmonary arteries. I receive a heparin bolus and have been on a heparin drip since. I was admitted and currently am on the floor. I have received great care and I love my ED and hospital family

 This terrifies me. I had told the other oncologist last week about my slowly progressing shortness of breath over the last three weeks. My mom and I both requested he run new CT's to see if the cancer had spread and maybe cuasing these symptoms. He dismissed my concerns and dismissed me from the appointment saying "then go get a sec9nd opinion".

Thank God I did!! Thanks to that first oncologist's neglect, I was a literal ticking time bomb. A blood clot in the lung is a death sentence. I praise God I had the MD Anderson appointment at the right time and got the right doctor to listen to me. He literally saved my life. 

An update that I finally feel good about. After last week's flop of an oncology visit, I got a second opinion appointment with MD Anderson, thanks to a lot of help from a friend. 

Y'ALL. The difference between here and my own hospital UTMB is night and day. This appointment has been seamless. I saw the nurse, PA, MD then pharmacist. The PA answered every question I had AND gave my mom and me a lot of education that we needed. Everyone was very kind, empathetic and eager to help. It made making a decision so much easier.

We then caught a shuttle to the Outpatient building and I drank oral contrast for a CT of chest, abdomen and pelvis. Lab work after. I start chemo next Wed. They do want a lung biopsy to know for certain whether or not the lung nodules are mets because if they are, that changes the chemo medication regimen and we have a different talk about recurrence. 

Where you go makes a difference. I had so much fear and anxiety with the huge lack of communication from the UTMB oncologist. Today is a sigh of relief. If you aren't getting the answers and/or care you need, do not hesitate to look elswhere. Get that second opinion. This is literally your life. That is worth fighting for. 

Please pray God provides for me financially as I start this treatment journey. 

Thank you,

Susan 

An update that I finally feel good about. After last week's flop of an oncology visit, I got a second opinion appointment with MD Anderson, thanks to a lot of help from a friend. 

Y'ALL. The difference between here and my own hospital UTMB is night and day. This appointment has been seamless. I saw the nurse, PA, MD then pharmacist. The PA answered every question I had AND gave my mom and me a lot of education that we needed. Everyone was very kind, empathetic and eager to help. It made making a decision so much easier.

We then caught a shuttle to the Outpatient building and I drank oral contrast for a CT of chest, abdomen and pelvis. Lab work after. I start chemo next Wed. They do want a lung biopsy to know for certain whether or not the lung nodules are mets because if they are, that changes the chemo medication regimen and we have a different talk about recurrence. 

Where you go makes a difference. I had so much fear and anxiety with the huge lack of communication from the UTMB oncologist. Today is a sigh of relief. If you aren't getting the answers and/or care you need, do not hesitate to look elswhere. Get that second opinion. This is literally your life. That is worth fighting for. 

Please pray God provides for me financially as I start this treatment journey. 

Thank you,

Susan 

I saw the oncologist yesterday.  The visit did not go well. He and his PA were both really excited and eager to start chemo, telling me all about the treatment chosen how long, etc. I had a lot of questions and concerns. Turns out, as I started asking my questions and voicing my concerns I saw the doc become short with me and seem quite irritated that I wasn't ready to just jump on board. 

I wanted to know could I work? Answer, no. He said "there's FMLA. You just need to get through this 6 months". Umm,no sir. That is unpaid. I will be homeless. Then I wanted to know what length of time chemo would extend my life. First he said it would cure it. I asked why then in medical journals does it point out colon cancer always comes back and patients live "on chemo for life". Then the answer was well we hope for 70/30. His final answer was 50/50. 

So, I will be getting a second opinion from a MD Anderson doctor. This is ridiculous. 

Long overdue but surgery and recovery have been hard. 

I had surgery Fri, 3/21 and had  right hemicolectomy performed. The surgeon removed the right ascending colon, and the entire baseball sized adenocarcinoma inside, after a 6 hour surgery. Surgery was supposed to be only 4-5 hours, however due to scar tissue from my prior gallbladder surgery, it took a lot longer. I did lose a fair amount of blood but I was just above the cutoff for a transfusion. My potassium was also low and I received several bags of potassium during my hospital stay. It was anticipated I would stay a few days as an inpatient. I actually stayed 6 days. 

It has been two weeks since surgery and I have been been home for one week. The first few days were rough. I got my pain under control and things have gotten better. I haven't had to take pain meds in 5 days! I slept most of the first few days; my body was exhausted. I am getting back to my normal routine. The fatigue is getting better each day, too. I'll take the small wins. 

I am eager to get back to work. I miss my EMS family and my ER friends. Staying home being still is not my norm. I am a workaholic and I love being an EMT. I love being on the truck; my partner, patients, and the community I serve. I love the ER. The chaos, ER co-workers, EMS friends at the ER and the craziness that comes every night. I don't know what I expected this surgery and recovery to be, but it wasn't this. This is way more than I bargained for. 

I don't know that anyone reads these updates. If you do, thank you for staying. I would love some encouragement, please. This is really hard mentally and emotionally. Thanks for your time. 

Sigh.....

I was supposed to see the oncologist this morning to find out my treatment plan for chemo and possibly radiation. However, the office called at 4pm yesterday and stated it was going to be rescheduled to April 22. I was surprised and asked why. The person on the other end couldn't give a reason. I asked for the nurse, doctor, anyone to call and explain the situation  

I received a return call immediately from the PA. She said they saw that my surgery is scheduled for 3/21 and they wanted to wait til after surgery to see me. I asked why because during my first oncology appointment I was told this follow up would be when I found out my plan for chemo. Clearly their communication and my understanding are not matching. She says there is no point to meet "because we really have nothing new to discuss" and "we have to wait on pathology before we can choose the chemo treatment". I was  upset and frustrated and started crying. I told her I had to make a deal with a co worker to trade EMS shifts with me just so I could have the day off for this appointment and now they cancel it at the very last minute? I'm not sitting at home with an open schedule just waiting around. I am still working two jobs so I can pay for these visits and support myself.

The PA kept saying "I understand your frustration". I patiently told her unless you have had, or currently have cancer, there is no way for her to understand the frustration when there is no or poor communication. Just don't keep me in the dark and don't wait til last the minute. 

Surgery is still scheduled for 3/21 and can't get here fast enough. This pain is relentless every day. I miss being able to run around at work and being able to climb stairs without being short of breath. I feel like a car whose dashboard has all the problem lights lit up. Lol My check engine light is definitely on. 😆 

I also got an email from UTMB for my financial responsibility due before the day of the surgery. $3080. Yikes. I only need one kidney, right? 🙃 I'll be back. Gonna go check the black market going rate. 🤪

If this cancer doesn't kill me these medical bills will. You can laugh. It's ok. I promise. 😉

Sigh.....

I was supposed to see the oncologist this morning to find out my treatment plan for chemo and possibly radiation. However, the office called at 4pm yesterday and stated it was going to be rescheduled to April 22. I was surprised and asked why. The person on the other end couldn't give a reason. I asked for the nurse, doctor, anyone to call and explain the situation  

I received a return call immediately from the PA. She said they saw that my surgery is scheduled for 3/21 and they wanted to wait til after surgery to see me. I asked why because during my first oncology appointment I was told this follow up would be when I found out my plan for chemo. Clearly their communication and my understanding are not matching. She says there is no point to meet "because we really have nothing new to discuss" and "we have to wait on pathology before we can choose the chemo treatment". I was  upset and frustrated and started crying. I told her I had to make a deal with a co worker to trade EMS shifts with me just so I could have the day off for this appointment and now they cancel it at the very last minute? I'm not sitting at home with an open schedule just waiting around. I am still working two jobs so I can pay for these visits and support myself.

The PA kept saying "I understand your frustration". I patiently told her unless you have had, or currently have cancer, there is no way for her to understand the frustration when there is no or poor communication. Just don't keep me in the dark and don't wait til last the minute. 

Surgery is still scheduled for 3/21 and can't get here fast enough. This pain is relentless every day. I miss being able to run around at work and being able to climb stairs without being short of breath. I feel like a car whose dashboard has all the problem lights lit up. Lol My check engine light is definitely on. 😆 

I also got an email from UTMB for my financial responsibility due before the day of the surgery. $3080. Yikes. I only need one kidney, right? 🙃 I'll be back. Gonna go check the black market going rate. 🤪

If this cancer doesn't kill me these medical bills will. You can laugh. It's ok. I promise. 😉

Finally....an update. 

So, I had my follow up with the surgeon this morning. I didn't get a call last Wed because the tumor board meeting was cancelled. That would have been good to know.

The surgeon said since he couldn't present my case to the tumor board last Wed, he called my oncologist early this morning. They discussed the results of the PET scan and decided "the lung nodules didn't uptake enough of the radioactive tracer. The nodules weren't 'lit up' enough". What does that translate to? It means they can't definitively say the nodules are or are not, metastatic tumors. It's a maybe. 😶

So he presented the options for me to choose from.

1. Do nothing. ***Hard pass. That was a big NO.

2. Do lung biopsies of each nodule to see if they are definitively metastatic tumors. Then do surgery. However, I would run the risk of potentially spreading cancer cells as the biopsy needle was withdrawn. I was not a fan of this option. 

3. Do surgery and perform a right hemicholectomy (remove the entire right side of the large colon where the tumor is). Recover from that and then deal with the lung issue and get chemo.

I opted to do surgery. I want this out before it grows larger and causes an obstruction, perforation or spreads further. 

Surgery is Fri, March 21. It will be a 4-5 hour surgery. He is hopeful he can reconnect the large and small intestine without issue. However, there is a small chance (5%ish) that I wake up with a colostomy. At this point, I don't care. I cannot take this pain and bloating any more. This pain is relentless and is wearing me down.

That's where things stand right now. It isn't a complete plan but at least it is a start. 

Thank you to everyone who has been so supportive, encouraging and has prayed and sent good vibes/positive energy. You have no idea how truly grateful I am. 

Thank you also to every single person who has donated. I pray every day for you to be blessed beyond measure. 

If things change, I will definitely update here. For now, surgery is in a couple weeks.