Hey guys. The strength, knowledge, and support you display is amazing. I need some of that. Your comments, suggestions, and ideas are welcome.
My wonderful, forty-five year old wife was recently diagnosed with stage 4 rectal cancer. We have four children (23yo daughter, 17yo son, 13 yo daughter, and 10yo daughter). She had been having bowel issues for a few years (more?), but just assumed it was IBS and hemorrhoids which she could fix if she just found the right diet. On April 22nd we learned that diet would not fix this. Here are the notes I've taken since that day. I'll work to put an appropriate signature block together soon.
22 April 2021 – My wife discovered a mass on the right side of her abdomen below her rib cage. It was after-hours and, after discussing with the triage nurse, we decided to head to the emergency room. My 23-year-old daughter had tested positive for COVID, so I was unable to go into the emergency room with my wife. After hours of waiting a CT scan ultimately showed a “Large heterogeneous low attenuating mass within the right hepatic lobe measuring 6.5 x 8.8 x 11 cm. Multiple peripheral contiguous lesions suspicious for a confluent mass. Findings are worrisome for malignancy. Metastatic or hepatic primary.” This was bad news, but the ER doctor reassured us that if it was cancer it did not appear to have spread which was good news.
23 April 2021 – Want to schedule follow-up visits, (MRI, Labs, Liver Biopsy) but have to schedule everything a couple weeks out due to COVID quarantine.
25 April 2021 – Our three other children (17, 13, 10) and I come down with COVID. My wife is still good.
26 April 2021 – My wife has a Zoom call with an oncologist. I miss it because I had what I thought was an important meeting. That was a mistake. The oncologist tells her that he thinks she has cancer, but needs to perform more tests.
29 April 2021 – My wife comes down with COVID. Quarantine clock resets. We have to reschedule appointments.
13 May 2021 – Another ER visit. My wife is nauseous and vomiting. She can’t keep food or water down. It is 10pm. My oldest daughter and I struggle to get my wife dressed. It was not pretty. Later my wife would joke, “You guys had me dressed like a hobo!”. At the ER, I am able to stay with her this time since my COVID isolation time was over. My wife is a “hard tick” so after a few sticks the nurse gets an IV in her and starts some anti-nausea medicine. She later throws up. Nurse switches out the anti-nausea medicine. My wife feels better. Another CT scan. ER doc says the mass has grown “a little bit”. Mass now measures 11 x 7 x 12cm. WTF. That seems like a lot to me. After discussion with the doctor, we decide she doesn’t need to be admitted. We head home with a couple prescriptions for ant-nausea medicine. Once we get home, she begins feeling nauseous again, but she doesn’t want to go back to the hospital. I head out at 3am to get her prescriptions filled. I had not known that there are 24-hour pharmacies. That’s cool. When I get back, she is already feeling better and resting.
14 May 2021 – MRI. The MRI folks, unapologetically, start two hours late, but otherwise uneventful.
17 May 2021 – Lab work. It takes a couple sticks, but they draw the blood. The following components were highlighted:
PLT 442 KuL High
MCHC 31.5 g/dL Low
CEA 253.5 ng/mL High
Glucose 107 mg/dL High
AST/SGOT 151 IU/L High
A/G ration 0.83 Ratio Low
Ferritin 132.8 ng/mL High
Hepatitis B surface ab, quant <5 mIU/mL Low
Iron, % saturation 11% (calc) Low
Iron, total 32 mcg/dL Low
18 May 2021 – Another Zoom call with the oncologist. He explains that changes in CEA can indicate cancer growth…or not. Hers is 235. He also says that closer looks at the scans indicate a mass in her rectum and that he believes she has stage IV rectal cancer. That’s bad news. I don’t think I can deny it anymore.
20 May 2021 – Liver Biopsy. Fasting. Another couple sticks.
21 May 2021 – Colonoscopy. More fasting. She really struggled to get the prep down the night before. It is the worst tasting thing she has ever had in her opinion. Colonoscopy confirms rectal cancer. Doctor struggled to get the probe through tumor area to look at the rest of the colon, but was able. Almost a compete blockage. Colonoscopy doctor is going to recommend surgery.
25 May 2021 – Consult with the Surgeon. Surgeon decides not to perform surgery, yet. He wants to give the chemo a chance to reduce the tumor size. I initially was disappointed, because I know her struggles to eat and eliminate that which she eats. However, long term, this is better. Delaying the chemo would just allow the tumors to continue to grow and spread.
25 May 2021 – Dance Recital. Despite her weakened state, my wife performs in her ballet dance recital and performs beautifully.
26 May 2021 – Appointment with the Oncologist. Confirms stage 4 rectal cancer. Plan is to start her on FOLFOX for 2-3 months and see how her body reacts. Wants to put her on Avastin as well, but will hold off initially due to the possibility of emergency surgery due to the obstructing tumor. Is also performing genetic testing.
27 May 2021 – CT Scan of Lungs. Another couple sticks. Need to perform another MRI, but unable to schedule to recent colonoscopy.
28 May 2021 – Port Surgery. More fasting. Nurse decides to call the PICC team to insert the IV. Yay! Using the ultrasound results in her only being stuck one time. Operating room running behind schedule. Surgery starts three hours late.
1 Jun 2021 – Chemo training with the nurse. She is still struggling to eat. If she is taking in enough calories to maintain her weight, it is just barely. She was 115lbs a few months ago. Now around 103lbs.
2 Jun 2021 – First Chemo.
Last edited by Carolinahusker
on Tue Jun 01, 2021 6:49 pm, edited 1 time in total.
DW Dx 5/21/21@45
Stage 4a Rectal cancer, Adenocarcinoma, 10 cm frm anal verge
T3N2pM1a, WT KRAS/NRAS/BRAF, MSI-Stable
4/22/21 ER, Liver mass 6.5x8.8x11cm
5/13/21 ER, vomiting, Liver mass 11x7x12cm
6/2/21 Infusion start, 2 FOLFOX, 2 FOLFOX + Avastin
6/15/21 Rectal/Liver tumors noticeably smaller
6/28/21 CEA 370.7
7/12/21 CEA 355.7
7/26/21 CEA 353
08/6/21 CEA 308