In My Own Words: An Altered Life
Conclusion of a two part series
[note from the editor: Last month, Libby shared with us excerpts from the journals (actually, one-sided responses written during “the silent times”) she kept in her early days of diagnosis and treatments leading up to and including her laryngectomy. We join her this month as she prepares to go home from the hospital after surgery…noting where we pick up the journals, we can see Libby never lost her characteristic good humor!]
[Then, a post surgery milestone:]
"Had 1st B.M. today. What a build up!"
[Describing doctors' rounds at this teaching hospital (Mt. Sinai):]
"You should have seen the group of residents that came in this A.M. About a dozen and Dr. U. Talk about an invasion!"
[A personal observation of my husband:]
"Please do yourself a favor and get new reading glasses soon. They're green, scratched. Thick headed! Testa Dura!"
[These last 2 words are Italian for thick headed, an expression often used by my mother. Made us both laugh.]
[Complaint Department: Does any of this have a familiar ring?]
"I spend most of the time stuck in chair, hooked up to meals on wheels."
"My veins kept rolling and they had to keep jabbing."
"Wish I could blow my nose. Tube is stitched into nose."
"I start coughing, gagging then some vomiting for no reason."
"Please hold off feeding until later. I had lunch for over 2 hours, which finished around 4:00."
"Can you give me anything for the nausea?"
"I'm uncomfortable. Have diarrhea."
"Could I have a clean gown? Got water on this from the nebulizer."
[Back to the discharge date concern:]
"I've been having some problems with gagging since Wed. P.M. Slowed flow of food. Still acts up."
"Realistically, Friday too early. Try for Saturday, but let situation decide.
"Must tell husband to let friends know no more mail or flowers to hospital."
"I'm supposed to go home tomorrow so I need to know what to do."
[Finally, the night before discharge and the last minute flurry of things to do]
"Could you give a tube rinse by syringe? The stuff in the feed bag looks congealed. Please, let's get this over with! [2-1/2 hours]. I want time to sponge bathe before my husband comes."
"Could you call my husband before he leaves home, to let me know what supplies we have? [delivered by medical supply] I will take things from here that I need."
[Husband later walks in with lots of supplies:]
"That was some bunch of "loot" you brought me! Thank everyone when you talk to them."
[Last minute check:]
"This is regular Jevity not Jevity Plus. That type gave me diarrhea. Glad I thought of it now rather than later. Call Jill to be sure food cans are Jevity and not Jevity Plus. I don't want a bunch of that!
[General chitchat with husband:]
"When I'm home, I'll have to watch you eat real food. Oh well, maybe I'll shed some extra pounds."
[Side effect of surgery - did lose weight and kept most of it off:]
"Yesterday was the first time I wore underwear and something other than a hospital gown."
"You can order Chinese some night for a change - at home, I mean."
"I must be getting better. I'm starting to really visualize food."
"Wish you could have met my regular night nurse. This is her day off. You would enjoy talking to her. We had a nice "visit" last night."
"We can ask the friends who volunteered to do food shopping."
"It's such a relief not to look at that damn clock."
[Finally, in the car and on the way HOME!]
"I can spit into tissues."
"Silly me. I forgot that I have a portable suction machine which can be used in the car. You can hook it up to the cigarette lighter."
[And getting back to normal topics:]
"Are the leaves turning?"
"See any deer?"
Notebook # 3
[Sept. 25, 1998…To husband while getting ready to go to bed]
“MY OWN BED!”
[Because the doctor didn't want me swallowing saliva yet, I had to figure out ways around that.]
"I'm going to use the toilet paper method tonight.' [Spitting into toilet paper and tossing it into a bag. Cheaper than Kleenex.] "I would have to turn the suction machine on every time I wanted to use it and that would wake both of us up. The nebulizer will be noisy enough."
[Next morning to husband:]
"I have a big favor to ask. I want to sit in the shower on 1 of those white plastic chairs to take a shower/bath. Would you scrub my back? Also, I need to wash my hair, but I'll need you to help me. If you saturate washcloths with warm water, then soapy water, then a careful rinse, that should do it." [The hair washing was done over a sink. The shower with a removable shower head.]
"Don't be shocked, but I'm a scary, bruised mess."
[Visiting nurse arrives and finds me sitting with the blow dryer:]
"Good morning! I'm trying to dry my hair."
[Question and answer period:]
"Yesterday I only had 4 cans."
"Do I dissolve all my morning meds at once?"
"Do I need to use a new feed bag or can I use the one from yesterday?"
"It takes long to feed."
"I'm meeting with someone from a laryngectomy support group at 3 today. They will lend me a voice prosthesis."
[At this point, I was unfamiliar with the term laryngectomee, just the name of the surgery. Also, I mislabeled the EL as a prosthesis. Had a lot to learn!]
"Here I've never been a smoker. Go figure."
[Gave nurse my medical history.]
"Until this all happened, the only time I was in the hospital was to have my kids."
[Chitchat with Visiting Nurse, asking about our house and property:]
"Things aren't usually this cluttered, but things have been piling up while I was away."
"My husband built the deck this summer. He's a biology teacher. He's always loved carpentry. Helped him cope with all my stuff."
"He doesn't want me to be alone. We have friends who will come and visit and give him a chance to get out."
"Would you mind if I lie down on the couch? You could read or catch up on your paperwork."
[Getting up, bathed and dressed really tired me out!]
[Had many discussions about the time my husband was taking off from work. As a very conscientious teacher, he had just started the school year with his new students and was then out of school for my surgery. He didn't want to leave me alone at home, but also didn't want to be away from his classes. We were trying to figure out how to resolve this.]
"Perhaps, if it's OK, Karna can come tomorrow. Maybe we can ask her to spend Tuesday here and you can go to work and then prepare for Thursday. Then we can have Tim and Lisa up for Friday."
"I'd like to minimize the days you take off from school, because I know it ultimately creates more backlog for you. If it's necessary, of course, but with these offers to help, why not take advantage?"
"I don't put that shirt in the dryer. I hang it."
[Next visit from Visiting Nurse:]
"Thank you for coming."
"I don't swallow, but it's not bad."
"The surgery was more extensive than originally planned and they will wait until healing occurs."
"We use humor all the time."
"My meals on wheels."
"Some friends will be visiting this week and he can go to work."
"They sent me home early because of my familiarity with trach care and felt I could handle feeding."
"If you need to leave before he returns, that's OK. I feel well."
"When I see real food I salivate."
"I consume 6 cans/day + water. Jevity + many vitamins."
"I really didn't know what to expect, but I try to roll with the punches."
"When I first looked in the mirror at the hospital, I was shocked. I looked pale as a corpse & my neck looks like a linebacker, so I put the mirror away and slept."
"My husband has made much possible."
"We're going to speech pathologist at Mt. Sinai on Thursday."
[Doorbell rings and coordinator of local club comes in bringing flowers.]
"Thank you! Those are lovely!"
[When asked about getting my own Servox, referring to my SLP:]
"She is ordering one. I will return it"
[Speaking about the EL borrowed from the local club.]
"How often does the battery need recharging?"
" I tire easily."
"Thank you so much."
[The usual ups and down of recuperation:]
"I got up around 5 with a headache & took Tylenol. It took a while before I went to sleep. My back feels a little stiff thru the shoulders. Must be getting old."
"I'll leave a note for her. Tell her to let herself in. I may still be asleep. She can fix a pot of coffee & bring things to read or whatever."
[The friend I was referring to not only came with reading material, but volunteered to weed my overgrown flower garden. Now THAT'S a friend!]
"I have lots of healthy weeds. You'll be in ecstasy!"
"The quality of my charades seems to be improving. I'm getting more across "saying" less."
[To my husband:]
"I'm going to Teresa's wedding on Oct. 16th."
[Less than a month after surgery]
"Don't know how long we'll stay, but will see."
[To some visitor:]
"My healing looked good from the outside. Maybe it's also good on the inside."
"My stubborn determination."
"Don't know if John explained, but I'm not allowed to swallow anything, so I have to spit every time my mouth fills with saliva. I can't wait to stop this."
[In between all this, I'm discussing real estate business by note. The "show" must go on]
"I need a favor. You'll have to give directions to the house from New Milford for a florist. I'll write them down for you."
[Then some old friends arrive:]
"These are my friends, Bob and Karna." Known them over 30 years."
[Referring to feeding tube:]
"Hopefully, I won't need it much longer."
[Chatting with friends:]
"I shower from the chest down and use washcloth for upper. John washed it for me at the sink."
"Pretty soon, I'll take my first nap."
"I haven't felt like reading yet - just short stuff, but pretty soon. I've got some great mysteries in the family room. Sue Grafton. Kay Scarpetta."
"Nap outside on lounge?"
"I really miss tasting food."
"I'll be doing my trach care in the bathroom."
"Like my stylish bib? Meant for this purpose to cover trach area."
"I could wear a scarf, but this is meant to allow air circulation too."
"These were crocheted for this purpose & given to me by the cancer support group. I have a bag full."
"Last night, John barbequed sausages & they looked so good I put a piece on my tongue & savored it. Later, I had a "taste" of cake."
"I'm going upstairs for a nap and am turning on my vaporizer, so you'll hear that noise. See you in a little while."
[Husband gets home from work and we discussed the day:]
"I tried to behave today."
"They brought a cooler with their own lunches. I "scolded" them."
"Tomorrow, we'll put a shopping list together. I'll help with the list part, but you're stuck with the shopping part. Oh well. Not for long."
"The visiting nurse came this A.M., took my vitals and visited a bit. I don't expect much assistance, but I don't think I need it."
"I'm going to go suction."
"I'm sucking on a Tic Tac and it tastes good!"
"I must say, the med. supply company has been very accommodating."
"The nurse said that ginger ale works thru clogs. Must be the bubbles."
[Fixed a very simple dinner, but that tired me out]
"Just taking a breather."
[Still, it felt good to be doing a normal routine!]
[Getting ready to drive in for first post-op doctor visit:]
"When we get to hosp. want you to drop me off before parking & I can sit & wait for you. Must be a chair somewhere for me."
"Will take calcium before we leave. Feel tingle in face, arms, legs - from exertion of coughing and trach care."
[After coughing calmed down on drive to city:]
"Maybe I'll just go with you to parking garage. I think I feel more confident & walking is OK."
[Wearing an "artful" scarf around my head covered the feeding tube effectively enough so I didn't draw any stares. Of course, in NY City, artful head coverings are standard and no one would notice. LOL!]
[This visit got the doctor's OK to remove the feeding tube that was stitched into my nose to keep it in place. Snip went the stiches and out came that unlamented tube.The swallow test took place next; I had to try to drink a cup of water. Not as easy as it sounds after more than 2 weeks without swallowing. I sipped cautiously and got the most awful taste in my mouth, but I had to make it work, so I kept sipping a few drops at a time until I got it all down. Yahoo!! I can officially eat again! Also met with the SLP to learn speaking techniques with that borrowed Servox]
[When we got home that night, there were several family members visiting. It was so good to see them all: our son, a brother-in-law and his wife and a nephew and his wife. While they all sat down to dinner, I opened a can of Progresso Chickarina soup. I put it in the blender, heated it up and then tasted the most heavenly food to my starved taste buds. Ahhh, how good it felt going down, savoring all those flavors like a connoisseur of fine wines. I will never forget that first meal and still think fondly of that delightful soup.]
[I started practicing with the Servox and attempted my first verbal conversations. I had to repeat myself and use body English at times, but generally got my ideas across. After a while, my voice got lower and lower, like an old record at slow speed.]
"The battery faded on my voice box so I'm truly voiceless while it charges. I should have charged the spare battery, but didn't expect this."
[First complication after coming home:]
"If Colleen from the Visiting Nurse Assoc. calls, tell her I would like to see her one last time. I have some questions and want her to look at the area around the trach opening."
[Still not using the term stoma.]
"I've been putting some Bacitracin on my neck, but it still looks red and feels raw. Should I do anything with the skin graft area? Do you have any advice you think I need?"
"Should I use Vitamin E on it?"
"Do my lungs sound clear?"
[I sure am full of questions!]
"I clean with kits 3 X day & use saline squirts. Once a day I remove entire tube & clean. At night I use the nebulizer."
"We have to get a whole house humidifier. Do you have any suggestions? What type? Where to buy?"
[Too bad I didn't know about WW yet. These questions could have been answered by people with experience. The visiting nurse wasn't able to give definitive answers.]
"My brother-in-law and sister-in-law have been here since Thurs. & are leaving tomorrow. I will then be "flying solo."
"We already notified 911."
"I go for a checkup on Oct. 22. Then we'll see when I get the implant. They couldn't do it before because they had to remove more than expected."
"I would not be a candidate for a transplant. I would have to take immuno-suppressants and not advisable for me."
[So here we are, exactly 8 years later. There have been many ups and downs over the years, but mostly ups. It's been quite a journey and if I forget that, I have these notebooks to remind me.]