Monday, March 28, 2016

Days blur together

It is Easter Monday. No school for the kiddos. Ordinarily I would be at work today. MM's home care nurse case manager will come today and a speech therapist this afternoon. MM and I were up at 5:45. He started having a few sips of coffee by mouth in the morning without choking. It is the rituals we miss. Rituals of preparing food for each other. All the driving gone, no more picking up kids in the van with snacks ready.

I worked on Tuesday. It was good to see everyone, to have a routine to follow. Uncool Wayne arrived around 4. I got home at 6:10. Wayne had taken boys to karate. 

Melanoma Man and I left just after 7 on Wednesday, after Butter had gotten on the bus, leaving uncool Wayne in charge of getting iMac to school. We stopped at a rest stop on I-75, so Melanoma Man could administer a tube feeding(lunch) just about 25 miles from Moffitt. Radiation was running a little late, but we weren't. I had a bag of magazines dropped off by Leila, to while away the time. MM said he felt weird afterwards. We picked up mashed potatos for him and salad for me to eat back at the hotel. During dinner(evening tube feeding), his hands started to shake. His whole upper body now shivering. Feverish, he asked for a blanket, breathing got faster. I had not brought a thermometer. It was a restless night for both of us, wondering if he would end up in an emergency room or hold his own. Morning brought exhaustion, but no more fever and chills. Thursday he slept most of the day, while I read or watched him nap. Friday we returned home, pretty depleted. A weekend at home was nice. Monday came fast and we were back in the car again, this time accompanied by a book on CD to fill the silent space between us on our way back to the cancer center. I brought the oxygen concentrator this time. It is a cumbersome unit that magically converts room air into oxygen which can then be delivered by nasal cannula to Melanoma Man. He uses it at night when we are home. We haven't traveled with it before. Melanoma Man objected. I told him it was to help me get a good night's sleep. Yesterday was his "last" day of radiation. The radiation tech asked him if he would like to ring the bell, a waiting room tradition for patients on their last day of radiation, a graduation of sorts. He said no, explaining to the tech that this is a journey, not a destination.

We were home by 2:15 pm. Melanoma Man hopped into bed for a nap. When the end of day finally came I sat on my side of the bed, feeling as if it was the first moment of rest in a month. I go to work today, which will be great and wonderful and scary. Scary to leave Melanoma Man unattended even though I believe he is ready for it. The weight of his well being is always with me. It is harder to carry when I am not with him.

Wednesday, March 23, 2016

Why I can't tell you how I feel

Because there is so much more to come, intense gets intenser. The only down time is between appointments when I am in Tampa. At home there is no downtime. There is the leaking sink in the hall bath. There is the front door handle that never works and in fact fell off last week. The rental company sends Kermit to fix it. Both Kermit and I know the door handle needs to be replaced. He has fixed it 4 times for me in the last 4 years. The fix always lasts 24-48 hours. There is laundry and groceries. There is the job I have only been to three days this month. I am thankful for my boss who has helped me navigate the painful process of applying for FMLA. There is the FMLA administrator who lost my forms, and then once they have been sent to her a second time, she tells me that my FMLA expired March 10th. She tells me about her mother's cancer when I am packing my bag to go back to the hospital on the day of Melanoma Man's second craniotomy March 11.  I think she should not be in this job. 

Now in Tampa I am missing iMac, and Butter, and Cha. There are therapy dogs outside the lab. I want therapy cats, even if they might bite. MM is in the CTscanner right now. We will go through the Chik fil a drive thru on the way back to the hotel to get my lunch. Back at the hotel I will administer MM's midday medication. He will administer the tube feeding. He has mastered it. The meds are tricky because they don't want to stay in solution and easily clog the tube. He would need 4 hands to unclog the tube himself. I think about sending Uncool Wayne, as the kids call their Uncle Wayne, next week with MM for radiation so I can be with the kids, who I have barely seen this month.

Thursday, March 10, 2016

Time, stark, bright, white, fast

March 11: I left home more than a day ago, with Melanoma Man heading for the local ER. The family friend, C, who happens to be a physician stopped by for a visit and realized what I too knew, that MM was deteriorating. C was clear, concise, direct. She asked if she should leave, if she had said too much. I said No, he needs to hear it and not from me. We had some phone calls with Moffitt on Monday and Tuesday. There was talk of the right frontal lobe tumor being responsible for his new symptoms, facial paralysis, difficulty swallowing and difficulty with the fingers in his left hand, MM having faith in his Moffitt team didn't want to involve any other medical players in his care. He didn't want anyone else's advice, only Moffitt's and even that might not have been enough. He asked me to call his internist which I did, knowing I would get no useful response. They have no urgent appointments available with any provider. They can take a message. I say no thank you, knowing how long it will take for the message to get to someone with the skills and education to understand it. I am not too disappointed because I know this is not the help he needs. MM did hear us, the friend and I. He gave his explanation of why he didn't need to go to the hospital. After a few hours of mulling it over he said he was ready to go. C called her friend A at the hospital. A met us in the emergency room, ordered the head CT, had the radiologist and neurosurgeon on standby to review. They reviewed the CT and ordered an MRI. The frontal lobe tumor had doubled in size since 2/24/16 and the amount of swelling was just wow, so much more than the MRI I looked at with Dr. Etame just 6 days ago. All this with no headache. MM looked frail and seemed sad all week. It is hard to tell what portion of this is due to being worn out by fighting and what portion of his mood is injury to his frontal lobe.

March 11, at 8 pm, 27 hours after we arrived at the hospital MM was wheeled into the operating room in our home town, far from Moffitt, but in good hands. The surgeon is the father of one of imac's classmates. In years past we stood on the soccer field sidelines watching iMac and his son play soccer. I am relieved by the quiet of the surgical waiting room. Everyone has gone home. At 9:45 pm Dr. H came in. The tumor was out. 

Saturday, March 5, 2016

On the fear of crying

Crying gives me a headache, so I haven't cried for awhile. The headache came anyway, last night in the Marriott, lying in bed next to Melanoma Man. Both of us not sleeping. We are supposed to be joyous and elated and we will be, but now we are just exhausted and disoriented. As if we have been to some far away planet and things changed here on earth while we were gone. We'll get home today to see iMac, Uncool Wayne, and Cha. We'll see Butter tomorrow when he returns from camping. I'm trying not to think about the upcoming week, but I have to. There is work. There is the job I didn't apply for last week because I couldn't get my head in the game. And there is driving. Melanoma Man is banned from driving, so there are a lot of places I need to get the kiddos to while I am at work.

Wednesday, March 2, 2016

The brothers in-law

My Mom passed away last Friday night with my sister at her side. I have received emails from all of the Anderson cousins with their memories of Mom from younger, happier days. I will clear out the memories of mom in the 17 years since Dad died and fill in the space with these stories and more of my own. Dad would have turned 88 this coming Sunday. I think they will celebrate together. The position at work that I have been waiting for just opened up. I am supposed to be applying online today or yesterday or the day before. I am at Moffitt Cancer Center in the Pre Anesthesia Testing waiting room with Melanoma Man. I can't get hooked up to wifi so the job application will have to wait until tonight after a day of waiting rooms. The brothers-in-law arrived yesterday. D, a flurry of activity, making biscuits, cleaning my kitchen, fixing my broken front door. W, who happens to be both nurse and lawyer, practicing with the Epi pen trainer in case Butter accidentally ingests pomegranates or pine nuts. Melanoma Man leaves a typed treatise on the kid's schedules. I leave a handwritten one. I purchased a tracfone for W, who will stay the whole time. W has a house phone back in North Carolina, but doesn't believe in cell phones. Since we have no landline at home it is essential. The kids will have to show him how to use it.