What has actually happened......
May 3rd - I had my first chemo treatment. I thought it went ok..... One odd thing happened, I received the adriamycin first (The Red Devil). It is pushed in your IV (thankfully I have a port so it won't damage my veins) but it takes about 20 - 30 minutes to push it in... It turns your urine red, you have to flush 2-3 times after using the toilet because you don't want it (even thought diluted) to splash up on anyone as it could damage their skin. They nurse even has to gown up and wear special gloves to administer it to me. Then they administer the cytoxan. Within five minutes of that med starting, the left side of my face goes numb. I thought it would go away. Finally after it does not, I tell the nurses. They check my vitals, they are ok.... One of the oncologists comes out to check on me.... tells me to take 2 benedryl when I get home to ward off any reaction. This is all new to me so I don't question. I do what I'm told!
remainder of that week - feel tired and worn down. Friday is the worst day. Brad says I look yucky. Just rest and lay around
Saturday May 7 - Wake up feeling good! Walked to the stop sign and back. Sat in the yard for about an hour telling Brad what are weeds in the flower bed.
Sunday May 8 - Mothers Day. We eat at a local Mexican Restaurant. Tasted so good after eating mostly peanut butter sandwiches and applesauce. Took a nap. That night not so good.... I was scared about returning to work the next day. Then I started vomiting. Blow it off to nerves.... Go to bed.... Going back to work half days tomorrow.
Monday May 9 - Get up to get ready for work. Took my shower using my shower chair. Got out of shower, couldn't breathe, felt so dizzy I couldn't see.... laid down on the bathroom floor.... panting trying to get myself together. I call for my daughter, Rebekah.... but then I start vomiting again. She helps me. I ask her to call her dad for guidance. He says, just call in to work today.... Rebekah calls my boss, tells her whats going on and that I'm actually laying on the bathroom floor. I'm so so dizzy and can't breathe. So.... Rebekah helps me to the couch.... lets me rest then helps me get some clothes on. It is AWFUL.... We call the doctor and ask about the nausea and the dizziness. They attempt to prescribe some other nausea meds but these will knock me out! I say no.... I'll be nauseous.... Rebekah calls the doc again and tries to describe my symptoms.... they are going to talk to the doctor..... She has also been fielding phone calls from her dad.... He calls me... realizes that talking is winding me and I can't stand, can't look at anything because just moving my eyes sends me into dizzy spells. He comes home from work.... He says this is it, we are going to the doctors office. He calls them once we are in the car... they say go to ER. They couldn't figure out what was wrong and told me to see my doc the next day... (there is a whole story with that ER visit, it was NOT a good visit).
Tuesday May 10 - Brad has updated my boss, told her I will be out the rest of the week. We go see Dr Filix. The ER did not communicate things very well or somehow communication was messed up. The ER told us to go see him at 9:30 the next day. The front desk had NO IDEA I was coming. I have lost 10 pounds in a week. I have to go in to see him in a wheelchair. I'm so weak.... so dizzy..... so out of breath. We talk to Dr Filix. He apologizes because this has happened. He states you never know how someone will react to the chemo until they get it. I totally understand that. I do. He talks about different options on what to do..... almost all of them involve the cytoxan. I told him point blank. I do NOT want anymore cytoxan. No more. He asks again, I say no more. So, he offers to reduce the amount of the Red Devil by 10% and I will go one week and get half of that dose, then the next week and get half then take a week off and repeat. I said, that sounds good.... let's do it.... Why was I so against the cytoxan? Because of what happened. A women at church has been going thru this chemo. The first dose she had severe asthma attacks afterwards.... got it controlled.... The second dose, she ended up in the ER and had to have steriod injections and breathing treatments to stop it. They stopped her Cytoxan. I did not want to go back to the ER or have permanent damage to my face because of a nerve issue from this med....
May 14 - We go to Chicago for a bridal shower for Rebekah. My WBC count was very low in the ER 1.3. So I'm wearing a mask everywhere... I'm also riding in a wheelchair because I am still so weak. The shower goes well but afterwards I go back to the hotel to nap... I also notice I'm starting to lose my hair. We go back to Andrew's families house after my nap and enjoy a good time.
The next week progesses with me resting a lot.
Monday May 16 - I go and get fitted for my prosthetics and bras. I also notice my hair is falling out in chunks. So I wear a hat the rest of the day so that my hair isn't falling everywhere. When Brad gets home from work, I tell him it's time.... He buzzes my head....
Wednesday May 18 - Well. That didn't last long. The buzz cut that is.... the small little buzzed hair is coming out EVERYWHERE and I now have bald patches on my head. Brad comes home that night he buzzes my hair as close as he can but realizes that's not what is needed. So at my request, he shaves my head so I don't have patches here and there. I'm bald. Completely bald.
May 21 - Rebekah has a bridal shower here in town. I go, wear a wig and my fake boobs. It went well, but again, I am exausted.
May 24 - chemo again, but trying the new dose of Adriamyacin only.... Only there about an hour... White cell count good... It went well. Came home, a little nauseous and can NOT sleep. To the point that I was up when Brad got up for work. I took some more ativan and laid down when he left for work at 6am. I last saw the clock at 6:33. I slept til 10 and then was up for the day.... ARRRGGGGG
May 31 - chemo. WBC's still ok. get my adriamyacin. My chemo nurse that day says "so you had a reaction to the cytoxan?" I tell her what happened. She said yeah, with that kind of reaction you don't need it. I feel relieved about this! Up all night again after this.... finally fall asleep around 5:30, up at 8
June 1 - appt with Dr Filix. Tell him about the sleeplessness.... He tells me to increase the ativan and sleeping pill on chemo nights.
Still not working... Dr Filix has written me off work until late August....
My sick pay is going to run out and our income will drop dramatically... I"m scared and nervous about this. I have said to Brad if the braces were paid off and the car were paid off, it would be ok.... Both of these should be paid off in august, but UGH!
Week of June 6 - a dear friend started a Go Fund Me account for our family. How awesome. She set a goal of $3000 .... some people have donated but not near the goal yet. But everything helps! I am so thankful and grateful.... can be found at https://www.gofundme.com/27jv7dgb
June 6 & 7 - I go off the deep end. I am mean and angry and cry at everything and yell and scream. I don't know why, but I pick everything apart. EVERYTHING. I have yelled at my kids and told them they don't do what I ask. I have yelled at my husband and complained to him about everything under the sun. I was so mean. I honestly don't remember all of it. He asks me to call my doctor the next day.
June 8 - I call my oncologist. They return the call and say that since my family doc has placed me and follows me on the antidepressants, he would feel more comfortable if she handled this. I call my family doc, (family Physician's Assistant). They can see me that afternoon. I talk with Danielle about what has happened. How I am sad about my breasts being gone, losing my hair.... my whole life being upside down and that I don't like it. That this is not what I imagined I would be doing right now. I am supposed to be finishing up wedding details with my daughter instead of fighting cancer and laying around like a blob most of the time. She says what I'm feeling is normal and encourages me to journal. I told her I have a blog. She says that's good. To do it more. Rebekah is with me and tells her of some of the things I have said and how I have acted. What no one says, because of embarrassment and likely because I didn't tell were some of the things I was actually feeling during those two days. Rebekah has said to me she felt satan was attacking me hard. I agree. I truly believe that satan was attacking me. I prayed and prayed to get him away. I read my bible to get him away, but he attacked me hard. Brad pointed out that I am a delayed reactor. That I did fine when my mom and brother died, but a month or more later, it hit me and I lost it completely. He pointed out that the look on my face and my actions have never been this bad, except when my mom died. I guess he's right, I go thru the motions and fight and then my adrenaline runs out and I catch up mentally to what is happening, I lose it. I truly didn't care if I lived or died during those days. I even thought about dying and what a relief that would be for me. Danielle (my P.A.) gave options. We decided to add on an antipsychotic in addition to my antidepressants. The reason being the antidepressants were working so lets add on and then when I'm done with this fight, we can take it away again.
June 9 - drop my long haired wig off at beauty parlor so she can fix it for the wedding.
June 10 - feeling better. Went to relay for life and walked (with Brad's help) the survivor lap. Then rode in the wheelchair with Brad and the kids and grandbabies for the caregiver lap.
June 14 - Chemo again. Bad news/ good news. My WBC count is 2.6 not good. Neutraphils are 1.6. They confer with Dr Filix and the decision is made to give me chemo. I must take precautions against infection the rest of the week. Come back for more chemo next week and CBC, but likely will just have CBC and no chemo. Chemo drops your white cell count and that shows that the chemo is working. because it is killing cells. But in return the risk of infection, particularly pneumonia is serious and real. Just how I wanted to go to my daughters wedding, in a mask!
June 15 - find out my grandson (who returned to his mom's last night) developed a fever. Oh joy. He has already had a cough. He goes to the doctor this afternoon to see what's up. The effects that this could have is enormous. He was hospitalized last fall with pneumonia. He will be back here Thursday night. Saturday is the wedding. I have low white cells and am prime picking for an infection. ARRRGGGGGGG
What my life SHOULD have been like......
May comes.... I love Spring... I'm spending time out in the yard so that I have a good tan for the wedding... Enjoying the time I have with my daughter before she gets married. Life is fun, exciting. Work is busy, but that's always good.
May 14 - we go to Chicago for a bridal shower. Man we have a good time ! I love the Castillo family and we always have fun with them... It's great!
Week of May 16 - still working on growing out my hair for the wedding so I can have a great hair do!
May 21 - I go help set up for Rebekah's bridal shower here in town. It looks great and is awesome. I'm up mingling with people, enjoying myself. It was so much fun! We go home and do things around the house and yard.
Memorial Day.... we walk down to the parade and have such a great time. It's warm and sunny and I get more sun that day instead of hiding in the shade.
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First week of June.... getting anxious because the wedding is like 2 weeks away. This is happening fast. But it's so exciting and I'm so happy for her!
Week of June 13 - This is it wedding week! I'm looking forward to it and can't wait.... Just thinking about how I'm going to get my hair done Saturday. Not worrying about money because there has been no cut in our income. It's all good and the same! Plan on taking Thursday and Friday off work to help out with things. Gonna enjoy this as much as possible and do things with Rebekah... So excited.....
So the wedding, I'm still excited but let me say this is NOT how I planned on spending this week and I did not plan on having to bedazzle a mask to wear at the wedding because of low white blood cells. I did not plan on questioning every purchase I make because of our seriously reduced income. But.... God has a plan for everything. I believe that. I believe it completely. "For I know the plans I have for you." declares the Lord, "Plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29: 11 So keeping my head up and with Him. You do the same.
I also listen to this song a lot... It really describes how I feel...... Stand in the Rain by Superchic
www.youtube.com/watch?v=LhcnrJvwwPo
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