I wrote this in my journal early this moring......
Last night was the first night in five days that I slept completely, only interrupted briefly by nurses checking vitals, etc. It’s amazing what fresh perspective can happen when one is not sleep deprived. I’m still here in 5 North. My lung is stubbornly refusing to heal and allow me to go home.
The positive side of this is that it has refreshed my memory of the “nice to haves” while in the hospital. I forgot about those tiny things that make it so much better. A sampling (husbands take note for the future) would be…
• Sleeping on your own pillows. A biggie. Randy went home yesterday to get them for me and I slept like a baby with them. Thank you honey.
• For us girls, hair product. I don’t need much. Until today didn’t even think about it, but the last two days found me taking sink baths, and washing my hair under the sink faucet, and then….what’s missing? Texturizing product! My cousin is bringing that to me today.
• Another for us girls thing is moisturizing lips gloss with a hint of color! Guys need this too, but maybe without the hint of color, or maybe you should consider it.
• Moisture cream for your face. They provide a fair one for the body, but our faces need our favorite one. Put that on the list.
• Pajama’s versus hospital gowns is a big one. Because my chest tube is in front, button down tops were important. Anything fleece is always good. Add in a short, easy to put on robe. When they have you walking those hospital halls, it’s cold, but you don’t want to wrestle with a long clumsy robe.
• Fuzzy socks! The ones with rubber runners that they give you at the hospital are “one size fits all” and not nice. You do not want to walk barefoot on these halls…trust me. Fuzzy socks.
It kind of sounds like I’m making fun of this. I am not. The first two days here I didn’t care or think about these things. I was drugged up, and had so many machines hanging off of me that surviving and not suffering was all that mattered. Now that I’m feeling good enough to care, these things are very nice to have around.
Where are we at? I’m still hopeful that the lung will repair itself, to allow me to go home and get things in order before the next step. I also am realistic that this may not happen. Which will stink, but life goes on no matter what. If I don’t get to go home, the next place is going to be the Fred and Lena Meijer Heart Center for surgery. Randy and I have put hours interrogating every kind of doctor that exists, searching our hearts, trying to make tough decisions. Full lobe removal? Partial resection? Targeted radiation? Chemo? Do nothing at all? We’ve exhausted all of these options mentally a hundred times.
Yesterday another associate of the lung surgeon stopped by to check on us. Yet again, we grilled him on all the options and asked his opinion. He was very direct in his comment that I’ll paraphrase. “If it were my Mom, I would tell her to have the lobe removed. Getting the cancer completely out is best. You need to consider quality of life. If the cancer is totally removed, you can recover from that and have good quality of life. If you opt for other options, your quality of life may not be for the best, and reality is that the cancer may not be gone.” He would not go on any further because he felt he’d be over-stepping his boss. But his message was very clear.
After a good night’s rest, I was able to think clearly about the reality of this statement. Quality of life versus quantity of life is a question every single cancer survivor must deal with. We wrestled with the “what if’s” in having 2 lobes out of five being removed. Will I need to be on oxygen? Maybe at times he said. It’s most likely but not always. When doing things that require extra effort, maybe.
Coming to these decisions has been exhausting for both of us. There were so many things to consider. There is no magical solution. Two doctors put it this way, however we want to treat this disease is a personal decision that they can’t and won’t try to influence us with.
Thank you for those that have come to visit with me. The hours here are long. I hesitated on asking people to come because I just couldn’t predict how I’d be when you got here. I still can’t, but do enjoy the company. Always thank you for the prayers. There are times when I’m lying in bed along at night, and I can just feel them lifting me up.
Ps. 118:24 “This is the day the Lord has made, let us rejoice and be glad in it.”
Judy in MI
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.
1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!
*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!
Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25