I’m writing this post from my room in the Progessive Care unit (step-down post ICU) a little before midnight on Saturday night. Boy, a lot has happened in the last few days – I unfortunately have not remembered much of it at all, but those who have been with me and family from afar have been incredibly worried and had the courtesy to let me in on what’s happened over these last few days…
After I returned from Ireland on June 8th, I knew that I’d soon be leaving for Cleveland again. The appointment was originally scheduled for June 12th, but had been rescheduled for June 14th. The planned CT scan turned into a PET scan because of pain I had been having while in Ireland.
News from the PET scan was not what I had hoped for. It showed 3 masses on my left chest wall, one low in the back, one low in the front and one above – between my armpit and heart.
This news was devastating, to say the least. We thought progress had been being made in getting rid of the tumors, and now new ones had developed.
I can actually feel one of the lower tumors. Every time I run my hand across it, I feel a plethora of emotions – but mainly anger. I would give anything to be able to reach inside and yank the damn thing out, but I can’t.
I knew I had to return to Cleveland soon; we were discussing radiation options and other forms of treatment. We attended church altogether on Sunday morning, and Michael and I treated our fathers to a special Father’s Day lunch in Macomb on June 18th before heading to Indiana. My cousin lived in Indiana, about 4 hours from Cleveland; we figured it was a good way to break up the long trip.
My next few days are sketchy – but from what I am told is that we had an appointment with Dr. Murthy, an oncologist, on June 20th, with plans to meet with a radiation oncologist and start prepping for radiation treatments.
My right lung, though no evidence of disease was seen in scans, showed about 1/4 worth of fluid sitting on the lung. This was important to drain off immediately, as radiation usually has you laying flat and radiation to the rib area usually has you holding your breath for a short period of time. The plan was to insert a PleurX catheter, which I would keep in indefinitely – allowing me to drain it at home if anymore fluid had accumulated.
During the placement of the PleurX catheter, my heart stopped three times. They had to shock it each time to get it going again. The team decided that they could not keep the PleurX in, so they drained what fluid they could and got me stabilized. I was in ICU for a day or two, and then moved to a unit called the “Step Down” unit.
Michael had been the only one with me from the 18th through approximately the 22nd, when he called my parents and told them to come out here. They brought our daughter so that we could see her. My dad took her back to Illinois today, and my mom and Michael have stayed.
It’s scary not to remember the last few days. To know that you were on the brink of death, three times, and the doctors were able to bring you back from that. Today has been the first day that I’m alert to the point of remembering things and asking questions, and it’s frightening to hear how the last few days have been. I have to speak only great things about my husband – having to hear that your wife’s heart stopped 3 different times while in the operating room would be devastating, but being by yourself, I believe, would make it so much more difficult. He called my parents and told them that they should come back this way – and both of his parents (and brother and sister in law) have prepared to make stops in to visit us, which has been very nice.
So the fluid was drained off the lung. The catheter was not left in. I had a chest tube for a few days, but that has come out. I’m on a steady stream of pain meds and Heparin, which helps to decrease the ability of blood to clot. I have rescheduled appointments to meet with the radiation oncologist this week to develop a plan for radiation. This plan will most likely consist of a large period of time here in Cleveland – roughly 3 weeks of radiation, M-F. I believe a regimen of chemotherapy will be started either in conjunction with the radiation or directly after – I’m not sure of their decision yet.
My family and I ask for continued prayers. This is a difficult road ahead of us and support is needed. This is considered a setback, but as with any setback, we have to deal with it as it comes.
I just have to thank God for allowing me to have such a great time on the Ireland trip. Any of these terrible things that have happened in the last few days could have easily happened 3,000 miles away in a country where no one knew my history and my siblings would have been beside themselves. But they would have taken care of me, I know that for a fact.
But it happened here, in Cleveland, among the doctors working on my case, and they will continue to devise a plan that will hopefully get rid of this cancer once and for all. It is simply wearing me down – I’m tired.
I feel my faith becoming shaky.
I feel that my body and I are at war against each other.
I feel that I’m being punished for something.
And I have finally quit trying to understand why this keeps happening, because I now know that I will never have that answer.
I am reminded of what I was told prior to my surgery last fall… “Medicine cannot fix this anymore. That’s why we have to do surgery.”
I’ve been knocked down so many times and each time, it becomes harder and harder to get back up.
I feel that, for the first time in all my years of being sick, this disease could actually take my life.
And it hurts me to see my daughter having to watch me go through this. People say that she won’t remember this; that we’ll only have the pictures of her with me in the hospital, but when she’s older and I’m healthy again, we’ll be able to enjoy a normal life. I sure hope that’s possible.
I prayed and prayed, before I got married, that my future husband would never have to endure this disease with me again (I had lymphoma at 15, Ewings sarcoma at 18) but that wasn’t in God’s plan. He brought my disease back when I was pregnant with my daughter. As difficult as it was to deal with that, He made sure that she was born happy and most importantly, healthy. But that still wasn’t going to cut it… I relapsed three short months after finishing treatment for the 3rd diagnosis. Since March 2016, my daughter has been to visit me in the hospital too many times to count. We have tried to maintain a life as normal as possible when treatment was prolonged for awhile, but it’s still hard. Some days, it seems as if I’ll be battling this disease forever – that there’s no end in sight. This makes me sad for my husband and my daughter – that I may not be around to experience the joys of wife and motherhood.
But like all hard things, I have to lean not on my own understanding, but more on God’s plan. Even though I may not understand it, and I may not like it, I’m not the one in charge – He is. I sure hope He chooses to keep me well – to be around for a long time for my husband and my daughter. But if not, I hope that the memories I have created with them will last for a lifetime. It’s too difficult to think of saying goodbye – but I know too many young mothers who have had this awful disease and left this world way too soon.
If you pray, I ask that you pray for myself and my family – to give us strength in whatever capacity we may need it.
If you feel compelled to help in other ways, please consider donating to my second baby – the Festival of L.I.F.E. that I created last year.
All of the money raised goes to the American Cancer Society to help cancer patients and their families through a multitude of ways – advocacy, education, research and services. I have benefited from several of the services and you probably know others who have been helped as well.
But we don’t have a crystal ball to look into the future. We can only pray and hope for the best outcome. I appreciate all of you following my journey – you are the reason I have to write these blog posts; I know someone out there is reading and hopefully gaining some inspiration.
Thank you for following my journey – it’s not over yet.