Exhalation and fear


Yesterday was an interesting day. I have been silent on this blog for a VERY long time. In February of this year, Spencer and I spent ten days in the Barbara Bush Children’s hospital, due to a virus that created pus filled blisters on his fingers, which then got infected, blisters in his throat, difficult breathing associated with croup, difficulty swallowing from the sores in his throat,  fever, and low blood counts. After ten days, we were released to go home, which was wonderful because he had taken the full course of antibiotics while we were there. We still don’t know what the virus was, but it was horrific and Spencer was miserable. But we got to go home, finally.

Within days of being home from Spencer’s hospital stay, I got pain in my abdomen. I threw up. Then, I felt better. By that, I mean I was not throwing up. After a few days of reprieve, I was up all night with what I thought to be gas in my abdomen. Then, I threw up again. I was encouraged to go to the Emergency room to rule out appendicitis. I am grateful to the friends that pushed me to go. Apparently I have a high tolerance for pain, and what I thought was gas was really my appendix (which does NOTHING) deciding its job was too hard and quitting on me. According to the doctor, my appendix was ‘hot’ and he had to take it out. Immediately.

After an emergency appendectomy, I was sent home to recover. My appendix had been very close to bursting which is why I am so grateful to my friends. My recovery could have been much, much worse.

I tried to lay low (hahaha) with three kiddos at home and, at the time, a cat that thought my healing belly was the perfect place to jump onto and knead. She was wrong. At least from my end of it. She may have been right from hers.

Anyway, with all the crazy around me, despite my best efforts to stay calm and quiet and heal, my recovery lasted into about May.

June saw me gone most of the weekends. I went to Anthocon, in New Hampshire, and to shave my head with the 46 Mommas in Kansas City, where I hung out with my sister from another mister, Tiffany. Then, I went to New York City for the second half of the Wounded Warrior Program sponsored Writer’s Workshop at the Writer’s Guild of America East offices, where I also hung out with Tiffany.

July brought our whole family down to Indiana for three weeks, spending time with sisters, brothers, in laws, nieces and nephews. It was a busy time, with seven to eight kids in one house at any given time.

August was, thankfully, calmer. I got LOTS of cleaning and organizing done at home, Chris returned to Indiana to help install some hardwood floors, and much got accomplished.

School started. That brings evenings of chaos and homework.

Spencer turned six years old.

In September and October, I experienced (and indeed am still experiencing) a series of pinched nerves and muscle spasms in my back that produce moderately annoying pain to pain that I equate to the early stages of childbirth, where I couldn’t catch my breath to speak a sentence. Unfortunately, we already decided that I have a high pain tolerance, so I am not exaggerating. I have also since learned that I have slight scoliosis in my back. Fortunately, I was able to get some relief from a visit to the chiropractor.

Unfortunately, some dumb nurse in recovery after Spencer’s last Lumbar Puncture thought it was a good idea to wake him about thirty minutes in when he stirred a little. This caused an episode where Spencer was out of control and almost literally the embodiment of ten second tom from 50 First dates. He was upset about something, very very upset, and would get angry and sad about it. Ten seconds would pass and the cycle would start again. It was horrible. He had to be physically restrained to avoid him hurting himself or others. So I spent forty five minutes doing that until the anesthesiologist came over and administered propophol to try to reboot him. During this, I reinjured my back. Meanwhile, the nurse in question flitted away, chanting “I didn’t do anything” as she ran. So Spencer’s last spinal tap went out with a bang. And no, I am not saying I punched the nurse. But I did think about it.

October has been interesting, needless to say. I’ve been on pain meds a good amount of time, so scatter brained.

But I also reached over 40 thousand words in my first novel, so that is huge for me. I am back on track, after all the things life has thrown at me to derail me in 2015.

Yesterday, I spent a majority of the day at the Maine Children’s Cancer Program office, with Spencer. It was a milestone day. And the response to my postings on facebook are that I must be so relieved that this is over. And for me, it is only kind of over. Spencer still takes oral chemo until November fourth. November 5, is his first day in over three years that he will not be on treatment, or taking chemo, or waiting to see what his counts are to see if he can go back on chemo. So I don’t feel really “done” yet. We still have one round of steroids left. OY.

But, yes, him not being hooked up to an IV for chemo again is a beautiful thought.

There was even a ceremony at the clinic, where I read a plaque and Spencer rang a bell to signify the end of chemo. And I got a little choked up.

But even before we headed to clinic, I knew that relief was a very, very small part of what I was feeling. I have uncountable thoughts in my head and the minority are happy based. I am terrified. The thing that took the cancer away from my son will soon be gone. The meds that helped him get it gone are not going to be in his body anymore. What does that mean? It means I am terrified that it was only gone because he was on the meds and that now, it will come back. I know the doctors know what they are doing. I love them and all that they have done for us. But I am scared.

I feel terrible. I refuse to tell him that he won’t have chemo in his port ever again. I don’t feel like I can tell him that, and be honest. Because, the odds that he would get Cancer in the first place were not good. And he got it. There are decent odds that he will relapse with the same kind of cancer, or that he will get some form of secondary cancer from the treatment. And I would feel like shit if I told him he was done forever and I ended up a liar. I don’t want to lie to him and I am not confident enough that it wouldn’t be a lie. And that is a gut wrenching feeling.

I know that if he was diagnosed again, I could handle it. I could because I have. It is the scariest thing I have ever gone through. And we came out on the other side. But I know so many people, now, in this club that no one wants to be part of, that have had relapses, that have earned their wings, that have lost so much in the battle with cancer. I felt guilty, last night, for all the mommas and daddies that don’t get to ring the bell. That have funerals as the end of their journey. It breaks my heart for them. I don’t think that I even have words to express my sorrow for those families. I just have holes in my heart for them. For the angels. For their families.

The nurse, when I spoke my fear about lying to spencer, told me that I need to have hope. I am afraid to. It may seem silly, but I am. I look back on when Spencer was a toddler, and I was terrified about him going under anesthesia to have his umbilical hernia surgically repaired. And that fear that was so very real at the time, was minor, compared to waiting to find out the results of his bone marrow biopsy.

I am not minimizing ANYONE’s fears for their children’s health. Colds, pneumonia, surgeries, whatever it may be that is scary for you. That is still very real. I am not trying to one up anyone. I am just sharing my inner thoughts.

I also worry about what I am going to find out about who Spencer is as a person. Is he going to change some of the things that I love so much about him when he is done with the meds? For example, will he still read cookbooks for enjoyment when he is not on steroids? I am scared that so much will change.

I am used to the schedules, to the appointments. I am used to expecting that there will be an asshole in the recovery room that I have to argue with. I am used to fevers meaning ER. I am used to what the meds do to his body and what meds he needs to fix the things that are wrong. For upset tummy, he gets Zofran. For hurting tummy, famotidine. For pain, he gets his owie meds. These, I know. There are schedules, calendars, doses, and it has been by these things that we run our life. I know there will be replacements that can be made, but the structure of these things will be gone.

And so, swirling around with the relief that we are nearing the end of this three year journey- the one that actually in hindsight, flew by- I am terrified, and sad. And much more.

And of course, I am afraid that he’s going to get a fever. Fever was the first symptom of the cancer. And what if the fever means the same thing, but we miss it because he can take Tylenol to reduce it again? We caught it so quickly. I am scared to death we won’t again. But at the same time, I do know that the clinic will be there, and Spencer’s doctor (who will soon be the first phone call we make, instead of the clinic) was the beautiful woman that found his cancer in the first place. I have faith in them. But my fear is bigger.

I also know, that we have warning this time, in terms of the big change in our lives. When he was diagnosed, it was sudden and BOOM, we were in the middle of learning about this thing that he had- Cancer. This has been a three month transition. First, was the last Spinal Tap. Second was the final IV chemo. There will be port removal, then there will be the last meds. It is a more drawn out process.

We learned about what the numbers they gave me meant. ANC, Hemoglobin, Lymphoblasts, I kind of feel like I studied Algebra for three years as an English Major. What will I do with that info now? I mean, I can spout numbers in relation to advocating for childhood cancer research. So that is a plus.

I am not at all sure what the point of this post is, in terms of anything. I know that I wanted, in some small way, to share what is going on in my head. There is relief, yes, but so much more.

2 thoughts on “Exhalation and fear

  1. Lady Lin says:

    With all the knowledge you have accumulated, and all your experience, I think you and Spencer should be patient advocates. Turn your fear into helping other kids and parents through that fear. I love you both so much. And I pray for you all the time.

    Liked by 1 person

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