gaile's Cancer Blog
December 1, 2008
| Oh My... So much for Thanksgiving | Views: 420 |
So, where do I begin? I had my two units of blood last Monday and Tuesday, plus more IV lasix to get rid of the massive quantities of fluid in my body. So Wednesday I started to feel better. My daughter drove my dad to his PET scan, and my mom and I went too. We then stopped and bought sandwiches to take back to my parent’s place to eat. So far so good!
Then my mom said she had a bladder infection for a long time and was too busy caring for my dad to go to the doc. So we took her to urgent care as it was about 3:30 and her doc was on vacation. This was the day before Thanksgiving. She came out with a prescription, but feeling worse. We got her home and she felt better, so we left about 7:00 PM (I had been with them for 11 hours and I was exhausted). So at 11:00 PM she called me crying that she was in so much pain, in her back, she was sure it was another ruptured disc. She didn’t know what to do and couldn’t leave my dad alone. Anyway, they are in a senior residence that provides ALL levels of care, but they have been in independent living. So we called for help, they sent an ambulance and said they would care for my dad. Well, he was afraid to stay alone so my 19 year old daughter and her boyfriend stayed all night with him (Thankfully!). He is TOTAL care: wheelchair, blind, deaf, can’t go to the bathroom, get food, get medications, etc. My husband went all day Thanksgiving and fed him keeping him company. My daughter and her boyfriend came back for the second night. Friday, I showed up intending stay a few hours. My daughter said she didn’t feel well and hadn’t slept, so I told her to take a nap and then come over. She did but was so sick. She had a fever of 101.1 so I sent her home and spent the night. I didn’t have my medications and had started bleeding vaginally. My husband had gone hiking for 3 days, my step dad’s two daughters spend every T’giving in Cabo San Lucas so were unavailable, my brother had had shoulder surgery and was helping my mom in the hospital. I was stuck. It was an awful night, Friday. Finally at noon on Saturday mother came home with my brother and his wife. Mother had had a severe kidney infection and it took 3 days of IV antibiotics to get her home. She was weak and exhausted, and totally unable to care for my step dad.
We decided to have T’giving at my brother’s on Sunday and my dad said he was too much trouble to come, but that we should all go and just bring him back food. So Sunday my daughter and I went to pick up my mom and my dad was terrified to have her leave him. So she didn’t go. She cried and was so upset as we thought it would be both my, and my dad’s last T’giving.
So we brought food back and they were fine. Today, Monday, I was feeling really good so I bought my dad some Ensure as he is not eating, no appetite. I went to check on them and saw that my mother was in really bad shape trying to care for him. He is 91, she is 84 and weighs 92 pounds! So I grabbed my mom and went to arrange for him to go to Skilled Nursing. They were both in danger to continue as they were. We were told they could admit him tomorrow as his primary doctor faxed over the order just after I asked for it! I called his oldest daughter (who is 68) and she cried and fell apart. We decided not to tell my dad today as he would be so angry he would take it out on my mom. So the medical team at the care center said they would come in the morning and insist that he go while my mom recovered from her illness or it could seriously harm her. My brother was going to stay all day and support both of my parents as I have chemo tomorrow. THEN… my brother called back after about 10 minutes and said his wife’s brother was found dead and they just got the call. He was crying and unable to locate his wife to tell her, he said he couldn’t help the next day. Anyway, I made other arrangements, then he called back and said he could come as they weren’t going to NY (we’re in Calif.) until the following day. Okay, all was well.
I had a call into my oncologist (my dad and I both share her) to find out the PET scan results. I waited at my parents as my doc usually doesn’t call until about 7:00 PM. My parents were a mess by 7:30 so I got them both to bed. At 8:00 as I unlocked my car to finally go home, the oncologist called me. Bad news. The melanoma was spreading rapidly. Numerous tumors in his lungs, liver, spine, fluid around his lungs and an abnormal lymph node. He is too old, and frail, and it is progressing too quickly for treatment, but she would check a second opinion just so I could tell his daughters I did. Then I was royally reamed out by my oncologist for care-taking anybody at all. She was very upset and told me absolutely to stop. Here I was not taking my medication, not sleeping, and bleeding heavily. Well shit. There was no one else available. Tonight I am still bleeding very heavily.
But geez, yeah we know I’m terminal. Now so is my dad. My sister-in-law’s brother died (very unexpectedly, maybe a heart attack), my mother is a mess, my daughter is still sick and it could be her kidney’s, appendix, or an ulcer. My husband is being an idiot and yells at me for the most ridiculous things. Anyway, I told my step-sister that I CAN’T care-take anymore, but she and her sister are worthless. My doc said that just because I am in close proximity doesn’t mean that I should take responsibility. I told her that, and she never offered to help, she just asked if I was told how much time her dad had left. I said no one knows the answer to that with any accuracy, so maybe they should plan to spend time with him.
So, happy Thanksgiving huh? My brother had planned on 9 people, and when we finally had it on Sunday there were 4 of us. But we enjoyed each other and the food, and had a break from the madness. We really had no idea what was coming. We thought the crisis was over. Oh, and NO ONE came by to care for my dad while my mom was in the hospital. One time, the first day a nurse came to check on him. One time in 3 days even though he can’t do anything for himself! It was very upsetting. Thank goodness we stayed with him every minute. The nurse lied after my mom was back home and said she came twice (whopp dee do), a lie, and that he was alone both times. Another lie! So I also had to make a report about that.
So back to my chemo tomorrow. I hope I stop bleeding soon it is awful. My CEA (tumor marker) fell another 200 points, which is good, but not impressive. It is still 2600. I pray I won’t need any more transfusions. I have dropped 12 pounds of fluid this week, peeing all of the time! So nice. I look more normal and feel great. I can now climb stairs and breathe too!
Enough drama already. I don’t expect things can only get better, because they have been so challenging, that would be foolish. It is going to be difficult for everyone as my dad’s disease progresses. And mine too. My poor mom. I’m going to sleep… Love to you all, thanks for letting me vent/purge again. Gaile
Summary:
Oh My... So much for Thanksgiving, 
12 comments)
Thanks for your support -
Lord have mercy! I am exhausted just reading of all the events that took place.
Gaile, that is just too much for you to deal with. Please try to take care of yourself. I am worried about you. You need to be resting & taking care of YOU!
I hope your family is on the mend. Your daughter has been such a trooper. I wonder if she just wore her body down, at any rate, I hope she is feeling better.
Take good care of you & know that we are here anytime you need to vent.
Hugs,
Monica
Gaile,
Run, don’t walk… You need a weekend away… Do you have a good friend you can spend the night with… or go away with for a night… Just one night of peace away from it all to clear your head….
And why is your husband yelling at you for stupid thins? What is wrong with people? I wish there was a place we could all go away to and have peace when the people around us act like that… Or when it just gets to be too much to handle…
Please take care of you…. Make your time count…
I am in Northern CA are you close to Santa Rosa?
(((hugs)))
Sonia
Gaile,
What a week! You definitely need a breather!
I hope your chemo today goes well and that all your loved ones feel better too. It is just a shame that you have to bend over backwards with all you have going on yourself because some family members can’t step up to the plate. And what a toll it is taking on you, your daughter, your mother!
Lots of hugs,
Annie
Bless your heart…you have had such a hard week. I hope you can get some rest and take care of yourself, and that your mother and daughter will get rest as well.
You are in my thoughts and prayers.
Take care,
Jalene
Because I love you I am prepared to accept the above rant as a one time excuse for not sending me holiday cookies. Please be aware that, this in no way forgives any future transgressions.
I am amazed that anyone can possess the strength and character that you bring here time after time. I am sure someone has mentioned this, but just in case…you are a vast source my inspiration!
I pray for your health and strength. I pray someone steps up to share your burden. Most of all I pray the Lord may give you peace.
Mac
Gaile,
Wow, you need to slow down! I see that you are a true caretaker by nature, but I really hope you can be taken care of instead right now. Do you go to acupuncture/energy work/reiki etc? They may help you feel relaxed and refreshed at the same time escaping from all the drama for a moment.
My chemo is at 9am. I will also think of you and pray for you this afternoon.
Hugs,
Yuyu
Good Lord Gaile…
it sounds like you could use a big ole Cheech & Chong joint and some relaxing music to meditate by….
Love ya!
Celeni
I hope your chemo went okay yesterday. Have a plenty of rest.
Yuyu
Dear Gaile; The sequence of events surrounding your Thanksgiving, sounds more like a fast moving silent movie, characters running around but all in different directions. I hope you can put pressure on the facility to do more for your parents in the way of care. I also think you better write a serious letter to your step siblings and pretty much tell them they don’t have a choice in the matter of caretaking or atleast participating. YOu can’t be edected to jeapordize your own health for these very elderly parents, that do have others to take on the role. You might even need your own Oncologist to step in and make a call or two. I’m sure she would do that with you in the room as a teleconference call. She can’t be trying to care for you and have you do all this damage aside. I know how you must feel and that is also taxing on your health. I could just cry when I hear your story. There just has to be a way to get more help.
If you were bed ridden who would do this??? You have to start thinking like that now, even though you are not in that state. People have to get organized and you need to get them there.
Sorry for being so bold but there is no time to waste.
So sorry for all this on your lap Gaile. This should be a time for you to rest and reflect on the wonderful things that life gave you. Life is just not being very fair for you at this moment. How about a little church visit and pep talk with the minister. Anything will help at this point. Take care my friend, and may god give you strength to overcome this cloudy mist.
Weezie
Gaile,
How are you? Have you gotten some rest and down time?
I saw you posted on YuYu’s blog, I was relieved to see your encouraging message. I worry about you, having such a huge capacity to love and balancing that with your own needs.
Be well my friend…I am praying for you daily.
Mac
Hi Gaile; Thanks for that explanation on Neulasta. I went to a website to see a bunch of people who were so discouraged about that particular drug, and they were feeling so bad. I then went to another website to find out just how poisonous it is. Having said all of that, I guess it is the one good thing about Neulasta, raising the WBC and the old adage, no pain no gain. Well let’s hope that everyone who is getting that drug can tolerate it. I know you are one tough gal so you have been there and done that, and understand what and why it is given.
I hope you are feeling better than last post. If you want, please email me at: weeziefell@sympatico.ca to enlighten me. You know I find your posts most interesting. I have followed every word and experience so far. Just in case you need a private vent.
Weezie
Gaile, i’m never on this much, i’ve been so busy. but seriously i think of you so often..i’m always thinking of you. lots of love xo rachel