Tag Archives: cancer

A Safe Place

Standard

For the first time, I am ready to admit something. I don’t like walking through the downstairs living toom. Every time I do I look to the spot where a hospital bed sat for months and a man tossed and turned and moaned and ached and finally took his final breath. That’s hard to stomach and I can see so clearly in my mind that metal bed. I could trace the outline of it if I were asked. If I sit on the couch, I remember the view I had night after night of Brian’s head as he tried to sleep and the hours he spent playing with the bed control, eventually getting to the point where he wasn’t sure what it was for. Every time I leave and come home, I walk through the living room, past the spot where I used to have to step over the line that brought Brian oxygen; it was always snaking its way across the floor. I tripped over it countless times! It’s the place where I brought meals and drinks and medicine. It’s where a man so energetic and full of life left this world. The room doesn’t look the same to others. Now it has different furniture and the mantle and shelves are decorated again. But to me it looks exactly the same. It’s the spot where I whispered in Brian’s ear on May 27, 2012 that it was okay and he could let go and where I held his arm while a nurse held his wrist and told us when his pulse finally stopped at 12:07am on May 28. It’s the place where I looked across the bed, over Brian’s lifeless body, and just shared a silent moment with my brother of understanding and sadness.

I retreat upstairs a lot to the living room and bedroom of my own that I created in the weeks after Brian’s death. There are only three pieces of furniture that remain that were ours. Everything else is different and it needs to be. Even those pieces of furniture hold memories, but thankfully not memories of death. Brian and I didn’t spend time in the loft or my bedroom, so those rooms where I sit by myself are a kind of safe zone for me.

It’s been said that time heals all wounds, and I suppose that is probably true. But for me, not enough time has passed yet. The pictures in my mind are too vivid. The memories are just too fresh. So I make the walk up the stairs to the safety of my space and I concentrate on the memories before February 10: diagnosis and May 28: death. For now, it’s where I find my peace, my rest, and my joy.

Our Safe Places = Joy

Recovery

Standard

Surgery. It turns out that has been one of Jordan’s greatest fears. Yesterday at 4:50, his greatest fear became reality as he was wheeled into surgery from the safety of the pre-op room. In that tiny room, he and I listened as the anesthesiologist explained all the risks, the surgeon explained the procedure itself, and the nurse explained how she would be in touch with me every step of the way. What started out sounding like a simple procedure, suddenly seemed like a much more serious surgery. At 4:50, I hugged Jordan and kissed him on the forehead and promised that everything would be ok. He smiled meekly back at me and nodded. We said our I love yous and he was wheeled away, out of my sight, leaving me vulnerable and completely out of control.

Because of the compression on Jordan’s trachea and the vessels around his heart, just pumping him with drugs and knocking him out was not the best and safest route. The anesthesiologist needed him to go to sleep more or less on his own and then put him completely under, so he was given some gas and then IV drugs.  At 6:15 I got a call from the nurse saying Jordan was successfully anesthetized. His breathing tube and chest tube were in, and surgery had begun. Now the waiting game began.

At 7:16 I received the second phone call. Jordan was doing just fine and the two small incisions had been made and samples of the mass had already been removed and now it was time to work on getting the mass itself out of his body, freeing him from the cause of his pain and trapping him in ICU and the oncology floor. I felt a sense of relief…

…until 7:34 when my phone rang again. The mass was too large, I heard, and his chest had to be opened. Jordan was doing fine, they assured me of that, but knowing his chest was now open made me more than nervous. This had become much more serious. I know surgeries like this are done all the time. But opening his chest was supposed to be a slight possibility. When the anesthesiologist had  explained the risks of opening his chest, she had drawn an imaginary line down her chest with her finger. That imaginary line was suddenly Jordan’s reality. And his mother’s fear. It was such a long imaginary line. I used my cheerful telephone voice and said thank you and hung up. I knew he would be fine. I had people assuring me of that. I had to be content in my lack of control.

8:33… The next phone call was to inform me that the surgeon was still removing the mass, that it was more complicated than initially thought, but that Jordan was doing great. No blood had been given and things were progressing well. I texted someone, “Waiting sucks!!” With two explanation points. I could have added a few more.

9:42… The mass was almost out and Jordan was still hanging in there with no problems. They hoped to start closing him up shortly. My text had a tearful emoticon followed by “I have a headache.” My headache seemed very insignificant though. Who really cares about a headache when your son has his chest opened up and is having a mass removed from his body?

10:28… I finally got the phone call letting me know that Jordan was being closed up. What a relief after is such a long process. The surgeon, she told me, would be out to talk with me shortly (remember this is hospital time though). The ICU room was being prepared and my parents and I went upstairs to clear out his room on the oncology floor, as it was the last room available and might be needed. Cancer sucks. That floor should be a floor of completely empty rooms. Kids shouldn’t be having to deal with that horrible disease. Parents shouldn’t be having to worry. I have a lot of friends wanting to take big ugly sticks and put cancer in its place. If only we could…

At 11:50, seven hours after Jordan had been taken down the hall out of my sight, I talked with the surgeon who had taken such great care of him. The teratoma was certainly not the biggest one he had ever removed, but it was one of the more difficult. The next part of the story contradicted what I had heard before. This had likely been growing since birth and was probably the cause of Jordan’s pericarditis last year. It was missed last year during those tests. It had somehow managed to remain hidden, ready to bring Jordan down, collapsing him on the garage floor a week ago today. It It had also likely been compressing his airway for a very long time, so he should notice a big difference in his breathing from here on out. The mass had entangled itself in blood vessels and other “stuff” (medical term for junk in your chest) and it had been quite a task to disentangle it and safely remove it from his body. Jordan was now breathing on his own in ICU. I was breathing easier in the waiting room.

I have felt a wide range of emotions in hearing that the teratoma was there last year as I was in the ER crying and wondering why Jordan’s heart was racing and he was in pain. I have placed blame on myself for not listening to the ER doctor who wanted to admit him. What if they had decided to run more tests and discovered it? What if it wouldn’t have been so entangled and been smaller? What if? I shared my anger with a friend and he reminded me that I cannot change last year, that I needed to keep my spirits high for Jordan, and that my attitude was important. I needed to just let it ride. My response? “Good advice. Probably exactly what I would tell someone in my shoes!” I am not always good at taking my own advice. He was right though and I have been letting it go throughout the night and finding a place of peace.

When I saw Jordan in the ICU I broke down. I buried my face in my hands and sobbed. It was not a pretty picture. My face was covered in tears and, yes, snot! I was so relieved that this ordeal was over and now healing could begin. And for us, it is healing in many ways, not just from surgery. I listened to Jordan moaning in pain and my heart broke. I would have gladly taken his place on the operating table. I would do that for either of my sons without a thought.

This morning Jordan is fairly comfortable. He has a large scar down his chest, about 8 inches long. He has oxygen, chest tubes, IVs, a morphine pump, and pain. His pain is at a 2 or 3. He sleeps off and on. He asked me to take a picture of his chest so he could see it. His reaction was silence and eyes that had that look of fear I had seen prior to surgery. His blood pressure is very low and he is being monitored constantly. I have had to deal with my fair share of nurses in the last five months. These are some of the best. Everything from here on out is going to be easier. This is the worst and now we are on the road to recovery. Recovery from so many things life has thrown at us. We are making the world’s best lemonade out of the lemons we’ve been pummeled with.

While Jordan was on the table, when I heard that his chest was open, I got a text from a friend asking how surgery was going. I chatted and then said, “Know what’s cool? All the docs just got to see what an awesome, tender heart Jordan has! I’ve always known it. But they get to marvel at it!” Jordan does have one of the most tender hearts. I pictured it as glowing back there in the OR, radiating the tender light that he shows in life.

Today I am thankful for my little family of three. Jordan, Brian, Jacqueline. I think we are a pretty awesome trio. We have come through a lot and everything from here on out is going to be fine. We are recovering.

Recovery = Joy

Benign

Standard

Benign is my new favorite word. It means, of course, “not malignant.” Jordan has a benign teratoma residing in his chest, that wreaked some havoc, but is now (knock on wood) nothing more to us than a nuisance. Relief… I cannot tell you how much relief I feel.

Jordan has to have surgery to remove the teratoma and surgery is never without risks. There has been a concern all along about surgery and safety; the doctors and nurses have been taking all necessary precautions. This morning, however, the oncologists informed me that he is on the schedule for surgery tomorrow afternoon. The feel confident that all will go well.

Because Jordan is skinny, they do not want to go in through his chest. That would mean a long and painful recovery for him. Instead, they are going to go between his ribs and work their way up to the teratoma and get that bad boy out of there. So, Jordan’s manly chest will remain intact and he’ll have a nice scar on his side to show off. I’ll help him make up a great story about the scar. After surgery he will get to spend a couple more days in ICU…we just got out of there, but I am happy to go back with this news!

I looked up the word benign, certain it has other meanings. Oh yes, indeed, it does.

1. Showing or expressive of gentleness or kindness. I like that definition. It contains two words I hold dear. Gentleness and kindness… such good traits to strive for. I wish the world was filled with a lot more of those two things. Please be more gentle with yourself and others today. Let things go that would normally irritate you. Show extra kindness. Remember that most people are just trying to get through life unscathed, and life can be pretty brutal sometimes.

2. Having a kindly disposition; gracious. There’s that word again: kind. I like the word gracious as well. It conjures up such a pleasant picture. It makes me think of a welcoming host, the one who invites others in to sit down, make themselves comfortable, and who provides a place of calm. It reminds me that I should say please and thank you, be courteous in all that I do.

3. Favorable; propitious. This is certainly a favorable outcome, one that has filled me with gratitude and put a smile on my face. I hope I radiate happiness today. There is enough in me that it surely can’t help but overflow, spilling out onto everything.

4. Salubrious; healthful; pleasant or beneficial. What an appropriate set of words to describe the atmosphere in the hospital room today. We are on the oncology floor, a place where day in and day out, bad news is probably given. Just outside Jordan’s door, there are two ominous doors leading to the part of the floor where the most vulnerable patients are. How I wish I could open those doors and let them enjoy some healthful, pleasant breezes and take away their pain.

Benign, it turns out, is a special word. I’ve always thought of it as simply meaning “not harmful” or even “boring” but today I see that it is much more complex. It has much more to do with sympathy and mercy than I realized.

My joy for today is most certainly found in the word benign, but not just because of Jordan’s diagnosis. The word has given me perspective, once again, showed me a better way to look at others, to see my day, to picture the world around me.

Benign = Joy

Accepting All Gifts

Standard

Jordan is currently asleep, resting comfortably…sort of. He is wishing he could shower and wash his hair. He cannot lie flat and the pediatric beds are too small for his lanky 6’1″ body. He’s got IV tubes snaking from his arms, monitors stuck to his chest and hand, and a cannula piping oxygen into his nose. But otherwise, he’s comfortable.

This morning he had a heart echo and was able to lie flat for the half hour it took to complete. Then we waited for the appointed time for radiology to call him up for the mass to be aspirated. Due to the location, Jordan could have the tiniest amount of anesthesia, just enough to calm him. A local was applied to his chest and the needle was guided in and removed 120 mL of fluid from the mass, making it significantly smaller.120 mL, for those of us who still refuse to move to the metric system, is about four ounces. Jordan did very well during the procedure, though looking back he kind of wishes he had not been told all the concerns and risks involved. That made it more difficult to relax. I, on the other hand, love having too much information. The less I have, the more my imagination likes to work and fill in the gaps.

Jordan remembers me being in the room and then he remembers everything being finished, lying in PICU again. The anesthesiologist told us Jordan talked whenever questions were asked, but he was somewhere between awake and asleep. He also talked and was very alert, even moving into bed by himself after all was said and done. Apparently he was high as a kite though! It is probably best that he doesn’t remember anything. I doubt it was the highlight of his day.

The concern is that the fluid is infected. Samples are in cytology now, being looked over and we will have preliminary results “soon.” That is a term used in Hospital Standard Time that means one hour to four days, I believe. Jordan and I, and his brother too, are three extremely patient people. How three introverts ended up in the same family, I’m not sure. But it is turning out to be a blessing. We wait. We watch the monitors and listen to nurses and doctors walk around in the hallways. We see other patients wheeled around as they are taken for their own tests and procedures. We waste time on the Internet and take naps, listen to music and to visitors who come by.

I guess there are moments I wonder “why us?” Actually, I don’t think I have asked that question. Instead, I’ve wondered “why now?” I’d like a little break before the next bomb drops, if I’m honest. Just a short one. A few months… maybe even a whole year. I did create a blog called Joyful on Purpose though, and I must accept the gift of hardship that has allowed me to find joy in difficult times. And there it is! I never know what the “= Joy” will be, yet it always reveals itself in the end. Look at your hardships as gifts. Open the gifts and accept the contents with gratitude and remember this:

We have no right to ask when sorrow comes, “Why did this happen to me?” unless we ask the same question for every moment of happiness that comes our way. ~Author Unknown

Gifts of Hardship = Joy

Holding Steady

Standard

When Brian was diagnosed with melanoman in February it was a difficult day. Talking with the oncologist just confirmed our suspicions and we were left dealing with the process of making Brian comfortable as he journeyed toward death. Talking with the oncologist about Jordan is strangely more difficult. I have no answers. We are dealing with something that is probably very treatable and could even end up being relatively simple. But I have zero answers at this time.

It is becoming… irritating… to try to answer questions. I am sorry for being so unkind and blunt. I’m very patient, so while not having answers is uncomfortable, I would rather wait quietly until the professionals in charge know what is happening and can translate all of it for me into something I can deal with.

Here’s what I do know…

Jordan cannot lie flat because the mass in his chest compresses his airway and makes it difficult to breathe. He can’t have narcotics for pain because his heart rate drops dangerously low. He had a heart echo done and everything looked good, but it needs to be redone with him lying flat to get better images. Hopefully, since his pain has decreased over the last 24 hours, he will be able to do that. If that goes well, the doctors will have a better idea of what to do going forward. They need him to be able to tolerate anesthesia, but as of now he cannot do that, so they cannot safely work on the mass. However, they do hope to remove some of the fluid that is in it and perhaps that will alleviate some of the compression, making it easier for Jordan to lie down and to breathe normally.

We are in a holding pattern. Holding patterns are not fun, but I’d rather be in one and end up with the right answers and a more clear picture, than take off and rush to judgment. I am confident that Jordan is in good hands at the hospital.

To answer the dreaded “How are you doing?” question, I will tell you that I am doing very well. I have had my moments of crying and saying, “I can’t do this again.” But the reality is that I can do this again. This is not a repeat; this is not his father’s cancer. This will have a different outcome. I can do this again because right now, I am a mama bear who will protect her cub. Yes, my cub is 6’1″ and outweighs me, but I’m a fierce mama bear when I need to be. I have moments when I crumble, but in those moments I have people I reach out to and they reassure me that I am strong and that this isn’t fair, but I will come through.

Today I confessed to a trusted friend that “I feel like the universe is conspiring against me and testing me to see what I’m made of. I want to be made of pixie dust, not steel.” Maybe I’m an alloy though…a steel containing a fair amount of pixie dust. And maybe that is even tougher than steel, but way cooler.

Okay, so the joy in today is found where? In holding patterns, of course. Holding patterns are used to keep planes safe, to protect aircraft from potentially dangerous situations. They are about timing. The holding pattern Jordan and I are in right now is merely that: we are waiting for the correct timing to ensure Jordan lands safely.

Holding Patterns = Joy