Tuesday, September 29, 2009
Very stressed. Got a little done today. Trying to calm down. Going to get out of the house.
Please read today's posting from the blog I follow about Dancing with Cancer. She said some profound things, about living with disease, knowing it will kill you, but just not knowing when. She combined that thought with some spiritual aspects of Yom Kippur. (this is not part of the paranoid ramblings, although it does mention death, etc)
1. My first and biggest paranoid pondering is currently regarding the spinal injections that I had for my sciatic nerve issues in March. I had an MRI done in February, and nothing lit up and screamed CANCER, but...if there were just a few cells floating around, unfed, not doing anything...would injecting my back with a cortisone steroid send them into a growth frenzy? February to July is not that long a period of time for the growth that I ended up with.
2. I fear getting through the next couple of months. I fear losing my house. I fear living in my car.
3. I'm really afraid that I'll just live for years and be miserable, but unable to be normal. I fear the PET Scan showing a regression of growth, instead of an increase. I know, that's insane.
3a. I'm worried about how long I'll have to lie still on a hard surface for the PET Scan. I can't remember. And as much as I hate to ask for things, I may ask the doctor for a Valium for the event.
4. I'm paranoid that the imaging place person who was supposed to call me with prep instructions for my PET Scan in a few days somehow got ahold of my old, disconnected phone number. Now I have to call there tomorrow and find out.
5. I really love the UPS man. He's been such a good friend to me for years at work, and he called the other night, which meant the world to me. I'd love to see him before he retires (soon) and moves away to his farm in the Midwest. I'm afraid that no one would want to be close to someone who might die. I could so use one of his hugs though, from my birthday almost twin.
6. I feel really abandoned by the RS Pres'cy. No one has checked on me. No one told me I was being released from my chorister calling this Sunday. I heard it 2nd hand, since I wasn't there. Besides it being really hard to get up, since I don't sleep at night, and showering and dressing causes me to need a nap, I'm completely paranoid about all the flu germs and colds going around right now. Church is like a total germ-fest. Sometimes I start feeling sick just sitting in a crowded room there. And I know, through Facebook, that lots of families have illness right now!
7. My really old, 17 yr old cat, is looking rough. I thought she was just scruffy, but I touched her today, and she's all matted. She totally stopped grooming. So tomorrow, I have to try to cut her mats off and make sure she doesn't have WORMS underneath them. Yes, my aunt warned me to look for that if she had mats. I am struggling with my conscious right now regarding her lifespan and failing health.
8. Add the 10 yr old (?) dog to the above. Before I went in the hospital, his right eye clouded over like cataracts. In the three weeks I was there, his eye got worse. It's swollen, and red, and just gross. I'm pretty sure he has gone mostly blind. Sometimes he can't find doors, and won't go down a hall if the light isn't on. I may have to take them both to the vet. Do I need this stress? I know Becky will help me do this; she told me she would.
9. OK, some of these aren't paranoid, not as much as the first one. Mostly they are fears and stress. So this one is all the stuff I whine about all the time about phone calls, and applications, and disability, and insurance, etc, etc, ad naseum.
I listened to a song online today that I had only heard once before. Carrie Underwood's "Jesus Take the Wheel". I watched the video and listened. I was so touched, the chorus just spoke to me. I'm going to add it to my play list as another theme song. If I can remember how to work the play list.
Today I was going to get up and make my phone calls. I got up...for about an hour...on the computer...then went back to bed until lunchtime. I didn't sleep; I just lay there. Oh, and I did shower today; quite an accomplishment.
I talked to a dear friend from work today. She and her husband are going to do something for me that is helpful beyond belief. They have no idea. I am so thankful.
Saturday, September 26, 2009
I know of two women who have died from metastatic breast cancer. One was a couple years ago, a friend of my sister's, and recently the wife of my aunt's boss. Both of them went quite quickly, once it hit the organs. Both of them had husbands and the luxury of just being sick. Why couldn't I be the one to go quickly? Why couldn't they linger for years? It seems so unfair, and so unrealistic for me to try to deal with all this. Do I walk away from the house? Try to sell it? Live in the car? 9 days to the scan, then 7 more to the doctor, and I have to admit that I hope the results are very very bad.
Has my life not been crap enough? Why do I have to struggle through the financial side of this alone? It would seriously be less expensive to just die. The bills are stacking up, pouring in...and I don't even understand half of the information I've received regarding benefits and disability from work.
Here I am crying at bedtime, and I'm sure I won't be able to sleep. Tomorrow I will call the EAP support line, and try to get in to see a counselor, although, frankly, that just gives me a place to cry. I guess they have financial counselors too though. And I need Brad to see someone too.
I thanked and hugged the nurse who found me, unconscious, heart not beating, in the hospital. I'm just not feeling very thankful for that right now. Yeah, there would have been things to sort out, and Brad would have been devastated, not being prepared, and would have to go live with Dad and Jolyn...he would not have been happy. He's not going to be any happier when it happens unless I can get through this few months of financial mire, get him employed, and get everything "in order". I just feel like I cannot cope with all of this. Hence my hope that I truly am dying. I know that is a bad thing to say, and just points to depression, but seriously, it's reality-based depression! There's too much to do, and I am not feeling well tonight. My hands hurt, my muscles have that all-over ache, like when you have a flu, and I have a low-grade fever. Sometimes I feel sick like this and sometimes I feel like I really should try to go back to work. But my bones hurt at my tailbone and in the pelvic area; I couldn't sit for more than an hour or so at a time without lying down. If I can even remember how to do everything, and then there's the long drive that's already nearly an hour seated. Plus, I'd have to take more meds to cope with all of that inherent stress. Taking the ADD meds that keep me from screaming at people, also seem to not act well with my Xanax and Zoloft, and I don't sleep well when I take it. I don't know if I can wait 2 more weeks to see the doctor. I need to call the person at his office who talked to the disability company.
I just don't know. Really the only help with advice my sisters give is to get rid of all my pets. That's like a drop of water in the ocean. I called the appt guy to try to get in to see the Bishop, but he hasn't returned my call since yesterday afternoon. My friend who will pick up Brad for church tomorrow is going to mention it to the Bishop. I'm sinking here. I just don't know what to do.
Now someone might actually read it...besides the people I force to, so maybe I'd better strive to come up with something more positive and/or insightful.
Margo from work brought some flowers to me today which had been sent to me at work. They were from the mortgage people that I worked with on refinances at the Wells Fargo Home Mortgage Branch! So thoughtful! I miss working with them...they are the best! Thank you Brandon, Kari, Chris and Brian!
Had brunch this morning with a whole ton of relatives. My cousin Russell was down from Utah (yes, he is a Utard) and wanted to see me...everyone thought I was dying a month and half ago. It was great fun! Ok, I'll add the picture.
35 minutes until the women's broadcast starts; don't think I'm going to make it showered and dressed nicely in time to get to the stake center. Was going to watch at my sister's house but I didn't tell her in time so she made other plans. Oops.
Thursday, September 24, 2009
I realized today that I rarely have anything positive to say. I can think of ONE blog that was positive. And the effects of that are wearing off. So, sorry Followers; I'm having a hard time coming up with positive, or even funny at times! I know that the Funny is what you're all after.
I'll try to work up some new material.
Wednesday, September 23, 2009
Just found out that I need to send a check in to my company for about $300 for my insurance premiums since August. But it sounds like the Long term disability application process has been started. My luck they'll say, nope, sorry; she could be sitting and should be working.
Spent the afternoon yesterday with someone with even more reason to be depressed...she said it would be easier to be dying of cancer. I'd have to agree, but I have a feeling that I'm not going to get out of things that easily. 10 more days to the PET Scan. Maybe I should find some more Ambien? (Go ahead, yell at me.) How do I hope for things to look GOOD on the scan, when I feel so unable to cope? I just don't know.
My ex is going to have to step up and help OUR son with college applications and job applications. HELP, not just yell and give guilt. I can't deal with my stuff and his stuff.
I haven't been sleeping at night again. I'm going to have to stick with xanax in the mornings and not take the Adderall. That seems to be what makes me not sleep; taking Adderall in the morning, even though it's a small dose. So today, after not sleeping, I said screw it, took the xanax, and slept all day.
I started coloring. Yeah, like coloring books and crayons...but I got some colored pencils too, and a book of design patterns that you color in. Did that all afternoon with Becky and her daughter the other day. That was a good day.
I haven't had my blood drawn yet. Maybe tomorrow if I sleep tonight.
Tried to get ready for bed but thinking about the insurance premiums has driven me to the computer. Apparently is was all in a letter that I didn't read closely enough because I thought it was a duplicate. So, we pay it and then have no money left. No choice there.
But my big thing tonight, and seriously I really can't help thinking this...WHY did someone have to find me the night of the "incident"? I mean seriously, I really hope the PET Scan shows I'm dying fast. I've had enough. More than enough.
Sunday, September 20, 2009
The hemorrhoids / post irradiation IBS (I made that up) / finicky stomach is still driving me crazy. I have brief partial days where I think I may survive it, then...wooops! And speaking of those suppositories, I am sick of sticking my finger in my butt. Yep, I said it. Karen, take note. Oh, and I think I forgot to mention that on Friday, I was out driving Brad somewhere, and got that urge...clinched until I got home, but was too slow walking, and of course, it's hard to clinch and walk...long story short...I pooped my pants. Exhausting ordeal, the whole thing. I called my sister and cried for quite a while, then took a long nap. Woke up at 9;00pm. It was awful. And while we're on the subject...I love farts. I very rarely trust them these days, but when it's truly just a pressure-relieving fart, it's so great.
Trying to chill, as I promised the doctor. I'm doing a pretty good job, as far as the diagnosis / prognosis goes. I'm so stressed about bills and paperwork and applications, that I teeter on the brink of shutting down. Becky is going to come tomorrow and take me to get my blood drawn, which I have procrastinated for a week, and help with some phone calls. I love her.
One of the stressful phone calls, the one from the insurance company, was actually from this Wellpoint program where they give you a nurse/case worker type thing. (Well, until I lose my insurance in a month.) I spent an hour and a half on the phone with her the other day. The one that was from the disability company never returned my message!
The nurse person from Wellpoint suggested coloring for stress relief and occupying one's mind. Sounds great, and I am planning a trip to Michael's tomorrow for coloring books and crayons.
OK, one little worry, which I have relegated to "ask Dr. P" when I see him...in February, when I had the MRI on my lumbar before the pain center did the epidural injections, they didn't mention anything hinky. I would REALLY like them to take a 2nd look at the films, and look for cancer-type hinkiness...because what I'm wondering is, if there were even tiny cancer cells at that time, whether they end up seeing them or not, did injecting my back with steroids send them into a growth frenzy???
I went out last night. Barely made it; geez, hair, make-up...to karaoke at somewhere close to here that was (erroneously) recommended. Jamie and Ray met me there, then Joy, David and Josh came. It was so fun being with everyone, and I did sing once. The rest of the music chosen by the senior citizens in attendance just about put us to sleep, but I do have to say, they have a kick-ass sound system, and he adjusted it for my voice, and made me sound great. Except for the part of that song I always screw up and miss the key...
Wednesday, September 16, 2009
I woke up at 3:00pm. I had another voicemail, this time from the disability company. MORE STRESS!! Gosh it was now past close of business Eastern Time, so I have to call them tomorrow too. I hate this stress and anxiety! I don't deal well. I have so much to do tomorrow...need to return calls, get blood drawn and I have a mammogram appointment. I have to renew my insurance over the phone before I leave.
OH, and I keep almost blocking this out! The psychologist I saw about 8 yrs ago, whom I wanted to see so badly now, returned my call (another voicemail) and is so overbooked he doesn't anticipate adding any appointments until Spring.
I'm not sure which thing is stressing me the most.
I need some hand-holding. I need prescriptions and bed.
Tuesday, September 15, 2009
Metastatic Breast Cancer as Life Experience
Diane W. Scott, RN, PhD, FAAN
Recurrence. Metastasis. Relapse. Words to describe what may happen to every one diagnosed with breast cancer, and does to between 10 and 30 percent. For 8 to 24 percent of all, reoccurrence of breast cancer in some location will appear within two years of diagnosis. In the remaining 2 to 6 percent, it will occur sometime after the two-year point. The more aggressive the cell, the larger the tumor, the presence of cancer-positive axillary nodes at the time of surgery, a diagnosis of inflammatory breast cancer or Her 2-neu positivity are biologic indicators of higher risk for reoccurrence.
Reoccurrence means that breast cancer cells are found in some location in the body generally after treatment for the initial diagnosis has concluded and when no evidence of disease has been the case for a period of time. On biopsy, these cells are found to be the same cancer cells that were found on original diagnosis. If they are not, they may be considered a different primary cancer rather than a spread of the original cancer and as such, a new disease.
Metastasis may be local, regional or distant. Local mets are located in the originally-diagnosed breast or the contralateral or opposite breast. Local mets may be in the same or different location than was the original site. Regional mets include the lymph nodes around the breasts (Mammary), lungs (Hilar), and those nodes running in a chain from the armpit, up along the clavicle or collar bone and on up into the neck. Distant mets involve organs that are favorable to breast cancer cell colonization: Bone, Liver, Lung and less often Brain. Distant metastases can compromise survival because they ultimately interfere with the function of vital organs. Overall, if breast cancer is detected early and is treated properly, the majority diagnosed will live out a normal life span. Similarly, if metastasis is discovered early, there is a very good chance that appropriate treatment will place the disease in remission again.
For those who have metastatic disease, life becomes very complex. No matter how many supportive people are around, metastatic disease is a lonely experience. Emotions felt in the first newly-diagnosed, active treatment phase of recovery, are felt again but more intensely. Fear, Anxiety, Anger, Depression. Remaining hopeful, fighting feelings of helplessness, becomes a full- time job, no matter how many diversions life offers
The reality is that breast cancer is a chronic disease that may go in and out of remission over time. The aim of medicine at present is not cure, but permanent and complete remission, or the disappearance of any diagnostic sign of disease. Following medical treatment, two powerful natural forces within the body assist to maintain remission. The Immune System and the capacity for slow Repair of DNA and mutated genes. In the first six months following the end of cancer treatment, a subdivision of T-lymphocytes (antibodies) called Natural Killer Cells will proliferate. These immune cell are designed to patrol the blood and lymph systems, on the lookout for cancer cells. Their job is to track, find, lock onto and kill cancer cells. This process can be augmented by stress management aimed at reducing cortisol (the body's adrenaline) levels. Ultimately, the number and quality of NK cells produced is enhanced as stress hormones and neurotransmitters are decreased.
There is some evidence that DNA has the capacity to repair itself. Since cancer is generated by mutated genes that cause faulty protein production and thus abnormal or malignant tumors to develop, this process is an important aspect of the disease. DNA repair takes much longer than antibody mobilization, some scientists think that the repair process can be enhanced by acquiring harmony within. The membrane on the outside of the cell contains as many as 1000 receptors which communicate information from the atmosphere outside the cell to the inside of the cell. When the signals communicated are harmonious, repair and normal restoration may take place in DNA, located inside the cell. There are many complementary therapies available that may help to establish harmony. Scientific research testing several of these therapies is underway, but will take a long time. However, any effort that orders and organizes the environment, increases creative endeavor and establishes beauty in one's life will help to increase the harmony within. A cancer diagnosis gives permission to take life in hand and improve its quality.
- When you actively take charge of your life, its quality improves, and so may your chances for survival. The diagnosis of metastatic disease is a signal that you must go to work again and begin taking steps to increase your feelings of control and well-being, and to enhance your chances for survival.
- First, find out the exact nature of the metastasis. Request a talking appointment with your medical oncologist and either tape the session or ask someone close to you (spouse, good friend, adult child, other family member, etc.) to accompany you to the appointment and take notes. Go over scans, pathology reports and blood assays with the physician so that you get a good sense of what is happening in your body, Discuss treatment options and the oncologist's recommended treatment plan. If you are still in doubt, make an appointment for a second opinion with another cancer specialist outside of your own oncologist's health care system.
Second, your life and your health now become your first priority. You will need to give full attention to this 'new job' ahead. Most treatment programs are rigorous and may require time off from work or a protracted period away from the job. See your employer and human resources person to find out about your options.
Third, gather a support system around you. Quality is more important than quantity. Be reasonable about your expectations for support. Not every person can provide all three of the essentials of support. Assistance, Affection and Affirmation. Some friends can lend a helping hand but cannot provide the couch or the ear that are often needed. Others can be there as good listeners, helping you to feel as if you can get through the crisis. Support groups are a good way to bolster your support system. The group should never tire of the issues that breast cancer brings to the fore. A good group is a reliable place to get information and share resources, a place where every one can safely express feelings and emotions and can be an outlet for the pain and anguish that may otherwise be borne alone.
Fourth, actively participate in your treatment. Take steps to make it as comfortable as possible. Establish a good relationship with the person who will administer your treatment. Work with that individual to manage nausea, be assured that treatment is given correctly and safely, be kept up-to-date on your progress and response to treatment and be allowed privacy and comfort during the often prolonged time of treatment administration. While you are receiving treatment, take time to do relaxation exercises and visualization. The easiest way to invoke harmony within; during this time is to listen to a relaxation or imagery tape recording. Provide yourself with a free time for between 48 and 72 hours following treatment, when you rest, continue taking anti-nausea medication, and pamper yourself. One of the most prevalent side effects of treatment is fatigue. During this time, your body will do the natural thing to help you to survive. It will reroute your energy inward to cooperate with the many changes occurring with the treatment. You will experience this as fatigue. Allow yourself to lean into the feeling through rest, sleep, relaxation and imagery, yoga, any techniques that allow you and your body to come first. Having a massage following treatment is another good way to establish the flow and the harmony within Current research findings point to exercise, as tolerated between cycles of treatment, as an effective way to reduce nausea, fatigue and other side effects.
Fifth, take on the crisis of metastasis in manageable doses. A diagnosis of metastases is an overwhelming occurrence. No matter how well-informed and prepared you are for its possibility, reoccurrence is a shock. Be gentle with yourself. Try to off-set the crisis. Take it on in manageable doses. Take one thing at a time. Later on, you will be able to do more things, but initially, take what you have to do in a step-by-step fashion. This might be a good time to find a therapist or counselor who specializes in oncology or working with cancer patients, someone who understands the disease, its treatment and the emotional cost of the total experience can be a powerful ally. A short course of antidepressant or anti-anxiety medication may not only reduce the emotional pain, but may allow for an improved and more focused response to cancer treatment. Although this type of therapy may not be right at the moment, remember that it is available if needed later on.
Stress management and creating the harmony within are essential to the recovery process. Counseling may help you to develop new skills in relating to family, friends and co-workers, resolving old problems and issues that resurface, learning to set healthy boundaries, coming in touch with your spirit and your spirituality, and learning new ways of expression through journal-writing, meditation and other means of probing who you really are and what you are all about.
Strangely, the metastatic cancer experience provides advantages that life may not have offered otherwise. It bestows a wisdom that most people would not have gained until old age. The central issues of having metastatic disease are deep ones. Loneliness and isolation, exhaustion, living with uncertainty and, most important, finding new meaning and purpose in life. Take full advantage of this time, learn to submit and lean into things like fatigue, allow yourself to be number one, come toe-to-toe with your anger and fear, learn how to re-channel emotional energy to your benefit.
There is a significant possibility that your disease will then go into a partial or complete remission, or might stabilize with treatment. By working towards that end, you will be stronger and more skillful in any other challenge that might lie ahead. Streamline your life and make it organized and efficient, including getting your affairs in order. Everyone should.
Honor yourself and your life. Begin today.
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Doctor day today! From the primary care, stronger dose of Zoloft and hooray for the suppositories...I don't care if it's gross to talk about; they may save my life. Just swallowed my first shot at the new Zoloft dose. Let's just see if I feel sleepy soon...
Also saw the oncologist...the lovely Dr. P. He got a little freaked about the 1mg of Xanax. Hello sweetie pie...I told you that last time I saw you. He said I had Xanax (with the morphine and Ambien) the night of my "incident"...yeah, probably .25mg. The proverbial pat on the head. I am really convinced it was the Ambien. I've been taking a mg of Xanax for like a year or more. I asked the Primary Doctor, and she didn't bat an eye at it. I asked her if it was OK, or too much. I think she is of the opinion, if it helps, go for it, and obviously didn't consider it dangerous.
I asked him more of my silly paranoid questions. He said stay off the Internet and away from google late at night, to stop worrying about my prognosis, etc, until after the PET scan, which (YEA!) they are going to schedule for the first week in October. I told him about the crying in bed and he made that cute sad face that I just love.
He also assured me that Femara is the FIRST LINE of defense, the FIRST THING to do in cases like mine. I kept reading mention of chemo (which, hello, I'm NOT asking for) and wondering if I was just beyond hope and that's why we were doing what we were doing. He assured me no.
To break it down:
- Femara is the FIRST LINE OF DEFENSE
- Chill out until we see what the scan says
- Stay off the Internet late at night (he said, "I know how you get")
I saw one of my nurses from chemo in the hall. Even the nurses had heard about my "incident" and said I had worried them.
Between the "straining" in the bathroom, which I try not to do, and the crying in bed, the muscles in my sides, right below my ribs are sore. Oh I hope I sleep well tonight. Brad turned my mattress for the overly-used side is not the side I'm sleeping on. Had a bit of a nap earlier. A couple of hours. Oh good; I just yawned!
Even though I cried at both doctors, I do feel better tonight after seeing them and getting more stuff...hopefully better armed to handle this crisis.
I will post an article that I printed for Dr. P. It was one of the few with any info in it, and encouragement. Here is the part I really liked:
"For those who have metastatic disease, life becomes very complex. No matter how many supportive people are around, metastatic disease is a lonely experience. Emotions felt in the first newly-diagnosed, active treatment phase of recovery, are felt again but more intensely. Fear, Anxiety, Anger, Depression. Remaining hopeful, fighting feelings of helplessness, becomes a full- time job, no matter how many diversions life offers."
It goes on with some encouragement but staying healthy, immune system, etc. I'll post the whole thing.
Oh, I also called for an appt with Dr. Lovejoy. Haven't heard back though. If he doesn't call tomorrow, I'll call and make sure I gave the secretary my cell # correctly.
Monday, September 14, 2009
I'm seriously considering going back to an all liquid diet (TRUE liquids with NO pureed soup!!), yet I'm starving, so here I sit eating toast. Whole grain. I'm sure that digests well.
I've procrastinated calling my primary care doctor for two weeks, ran out of meds, couldn't sleep at night and have really been miserable for about a week or so. Anxiety has been high. I stay up all night googling metastatic breast cancer and waxing maudlin on Facebook.
I got some meds and finally slept last night. Thank goodness.
Yesterday, before I got the meds, I was lying on my bed resting, and crying, and thinking (which I do too much of) about my respiratory incident in the hospital, when my heart stopped, i.e. I was dead. I thought, why couldn't I have just stayed dead??? And why don't I have some wonderful near/actual death experience to draw on? I remember nothing.
Then, the more clever part of me thought...maybe I DID have a wonderful experience? Maybe I chose to return and chose not to remember (cuz, by comparison it would be no contest, right?)...ergo (love that word) maybe I still have something to do? Maybe getting my son graduated wasn't enough; maybe I need to get him better prepared?
I felt calmer after that, stopped crying and almost fell asleep.
Feel a lot better with some xanax in my system now too, even though my b-u-t-t is killing me, and thinking about a DNR order for hemorrhoid pain.
Thursday, September 10, 2009
It seems as though time just went on by
Friends all around,lifetime full of love
Some here on earth, most from God above
Focus on the journey,look back or ahead
Cant change the past,is what has been said
Look ahead can be scary,to say the very least
In our fathers loving arms we can find peace
Maybe right now,today is where you should be
Sharing with your loved ones your personality
What is ahead? it's not just your choice to make
Whats happening now is where you pound your stake
Enjoy life, laugh real hard, forget all your strife
Do something kind today, to change a persons life
Most of all remember how great you are today
In this game of life,you chose to come and play
And when and if God's choice, it comes to you dying
Just remember your not falling, you are really flying
Yes, Shelli..you have always had wings!
- Lou Mills
Wednesday, September 9, 2009
So they have this bell that you get to ring on your last radiation treatment day. Yesterday I told Becky, who had driven me, that I was not ringing the damn bell the next day, that I'd get some old fart to take my turn. Today, I asked my guys if I HAD to ring the bell, and shared that yesterday I said they couldn't MAKE me ring the damn bell...John lovingly explained to me that the bell wasn't just for me...it was for everyone in the lobby, to give them hope in the light at the end of the tunnel, to know that someone made it through. Very tenderly put. What a guy. I said, ok, for them I will gladly do it. I gave it a good ring and turned around and took the applause. I told people good luck on my way out, smiled and shook some hands. If it made some people feel good, people who are really sick, people in scarves because their hair is gone; if it gave them cause to smile, then thank you John for the explanation and the opportunity to do that for them.
Today was also my last physical therapy appointment. No more trips to radiation, no more therapist coming to the house. What WILL I do with myself without needing to set an alarm clock and shower? Will I shower? Will I get up? It's a very good question indeed. I HAVE to find something. Holy crap, I've been depressed enough when forced to get up and participate a bit in life! I gotta find something.
I wrote notes and took them today to all my radiation people. They all gave me wonderful hugs. What great people, not just doing a job, but giving service as well.
I have some new pain. In the base of my tailbone, and in my left flank? (that's what the PT called it) I call it lower middle back. I've had quite a bit of pain meds today because it was pretty bad earlier. This one is freaking me out a little because in that location, it could mean an organ. Or not. I dont' know. Wont' know until the illusive PET scan, which apparently won't happen for about a month, since I'll still be simmering, and we'll want a good picture of what the radiation has done. The right hip was actually feeling pretty good today, but that could have been the drugs talking.
In order to avoid lapsing into whining and complaining, that's it for now.
Tuesday, September 8, 2009
"I understand that the author of this blog says whatever the hell she pleases, that sometimes she says things that aren't really as big as she makes them out to be, because, well, she could be dying here. If I choose to continue reading this drivel, I will take it with a grain of salt, not tell HR, and laugh when she's funny and whenever she says "hey, I could be dying here..."
OK, some things ARE big deals. Life really sucks right now. DES needs proof of my disability status with work in order to process my request for AHCCSS assistance, and my short term disability, which should have kicked in about a month ago, has not yet sent me a check. OK, my doctor's office was a little late getting us the forms we needed to send them, but it's been a while. I was told they were cutting a check on Friday, but today their system said my claim was still pending. I am out of money. The hospital maxed my credit card when they asked me for more payment while I was hopped up on morphine. Prescriptions are running out and I really need to see my primary care doctor (for better prescriptions, of course). Every night I cry before bed. Every time I think about all this, I cry. Everything will be fine in a few months, I hope, but I don't know how I will get to that point.
Had my next-to-last radiation treatment today. My other guy, John, was there! I was so glad to see him again. I saw the doctor after my treatment. This scan issue is making me crazy. She says they won't do it for about a month after radiation is over, so they can make sure they capture progress. Apparently I keep nuking even after treatments stop, simmering, so to speak. I think I got a big dose today. I slept almost all day after getting home. I didn't make my phone calls, which were all to doctors for appointments for which I do not have copays available currently, so I got depressed and went back to bed. Woke up shortly before 8:00pm to my 18 yr old son asking what was for dinner...as if at that age he can't forage for himself! And when, in the last month and while, have I handed him dinner?? We have tons of left-overs from the wonderful meals that have been brought in; it's 9:00pm and he finally remembered a piece of chicken he had put in the freezer from one of those meals.
One of my running-out prescriptions is zanax. The one that keeps me semi-sane. The one that lets me sleep. I took a partial dose tonight to save some for tomorrow. I hope I can sleep tonight.
Listening to my "theme song" on my play list. Awesome song...some of the words (the chorus/refrain) I find comfort in:
Carry on my wayward son
There'll be peace when you are done
Lay your weary head to rest
Don't you cry no more
Carry on, you will always remember
Carry on, nothing equals the splendor
Now your life's no longer empty
Surely heaven waits for you!
Carry on my wayward son
There'll be peace when you are done
Lay your weary head to rest
Don't you cry (don't you cry no more)
I know; I'm a sap and a whiner. I added this song to my play list because they played it on a TV show the other night, and it's my era, and it's awesome...and then felt touched and shored up by some of the words.
I had something else to whine about, but now I can't remember what it was and gosh I hope I can get back to sleep.
Monday, September 7, 2009
Saturday, September 5, 2009
Breast cancer stages include:
- Stage 0 (including lobular carcinoma in situ and ductal carcinoma in situ)
- Stage I
- Stage II (including IIA and IIB)
- Stage III (including IIIA, IIIB, and IIIC)
- Stage IV
All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Femara:
HELLO! Back pain??? Bone pain?? The cancer is causing back & bone pain!! I don't need more!! And constipation? It had better go away when the radiation is over.
Arthritis; back, bone, leg, or arm pain; breast
pain; constipation; cough; diarrhea; dizziness; headache; hot flushes; flu-like symptoms; flushing; increased sweating; indigestion; infection; joint or muscle pain; loss of appetite; nausea; night sweats; pain; sleeplessness; stomach pain; tiredness; urinary tract infection; vaginal dryness; vomiting; weakness; weight gain or loss.
I think I'd better stop googling Femara side-effects.
Friday, September 4, 2009
I took doughnuts, Krispy Kremes, in to the radiation team. Sam was very excited. I am so glad. I wrote a note on top of the box to everyone.
SO...turns out I have TWO more treatments...just Tuesday and Wednesday. They I see the oncologist on Friday and find out why I am not yet scheduled for the PET scan. Insight Imaging called the other day, and I got so excited, thinking it was for the scan. *sigh* It was for my 6-month mammogram, from the other radiologist. Maybe I'll start to feel a little better by Tuesday. After a full week of nuking, I feel sorta crappy.
I decided today that my Facebook account would be for being funny and/or making fun of other people (who, of course, deserve it), and for life-threatening drama, folks would have to come here. 2 minutes later one of my sadistic acquainances asked how to get here...haha.
Working on a puzzle, which seems to be keeping my interest a bit. Thank goodness. But then the stupid cat jumped on it...it was salvagable, but geez; we covered it up and everything!!
Wednesday, September 2, 2009
I just wanted to say how much I appreciate the people at the radiation office. When I first started going, while an in-patient at the hospital, there were John and Sam. I was wheeled down on a gurney (that's what they do with in-patients) and therefore had to get from gurney to radiation platform-table-thing. They slid me over on a back board, and then when it was over, reversed which was higher and slid me back. I'm not a small person. I was a bit nervous about being dropped. Sam let me hold on to him and they promised not to drop me. And they didn't.
My first full week after release, they were both there. John always held out both hands to me to steady myself, and they were both always in such good spirits. Sam always has a hand squeeze or a shoulder pat for me. He has no idea how much that means.
The third week (I guess this was when everything kept breaking down) I came in on the ONE day it worked, and John was not there. I found out he was only filling in for someone who was on vacation! I was very sad. He made me feel so safe and secure, and ok.
I still have Sam, who also makes me feel safe and secure, even though he often has to see my big white ass when I get off the table to pull up my pants. The other day, I started crying a little at the end. He saw and said, "No need to cry; we'll be here tomorrow!!" haha. What a guy.
These two people are examples of the cream of the medical field crop. Thank you John and Sam for being there for me!