There are so many good people in my world to make up for some bad apples

Yesterday, I got really really upset at someone - unfortunately I can't name who - but it was painfully obvious that this person had no compassion for my health situation nor the upcoming changes to my financial situation. My family and I even got this idea that this person might think that life might be easier for that person if I just went ahead and died.

Well, it fired me up and gave me energy and I actually did more research on the computer than I have in a long while. It felt good having that energy. And I have some follow-up phone calls to make.

And then someone came through with a solution I needed and reminded that there are far more good people in my life than bad apples. And I want to thank that person from the bottom of my heart. It has relieved some of my financial situation immensely. Please send this person blessings and prayers for me. Thank you!

Staying comfortable

Right now, the only comfortable position for my arms and shoulders seems to be lying down. When I go out in public, I have to keep my left arm up, which then causes me to tense up my right side, too. Even sitting up in my chair is uncomfortable or at a table.

My last arm radiation treatment is tomorrow so this week I hope to begin addressing the lymphedema, pain, and strength in my arms and I can get out and about more.

I need to ask my dad and Scott to clean out my Humanities office this week.

We are also going to try to hold a birthday party at the pool this coming Saturday for Eddie - a very belated one. ineed to find out how many kids from his class will be in town for the holiday week.

I do think things are getting incrementally better, but is frustrating just the same. My dad reminds me that for several weeks after her heart surgery, she was very weak, shaky, and mom did everything for her. Now, she is doing things for me and has even built the deck. So she is a good role model for me to follow. Slowly but surely, right?

Haven't fallen off the face of the earth

I have been busy the last couple of days. Went to Eddie's swim lesson, then lunch with friends, then two appointments. Overdid it in the heat.

Today, I had an eye appointment and the doctor kindly changed out my contacts for me since my fingers are shaky and numb. Offered to do it again next month if I need it.

Then I had a nice long visit with one of my oldest friends, Paula. We have known each other 25 years. Her visit buoyed my spirits. She took me to my appointment, too.

It got too hot today, so dad and Scott will put our air conditioners in tomorrow as I can't survive the weekend in that kind of heat.

Still trying to find a balance with the new fentanyl patch dose, dilaudid, and constipation. Haven't hit the right balance yet.

Lymphedema in my arm is worse in the heat.

Two more arm radiation appointments. I think I am getting more energy, but it is slow work.I have much to be thankful for, including a wonderful care team, friends, family, and colleagues. Thank you everyone!

A Much Needed Break

I saw Dr. K yesterday and after recounting all the side effects I have, he agreed I need a break, at least until after Eddie starts school, so at least a couple of weeks.

We talked about treatment options - chemotherapy - and he also looking I to the TDM-1 trial. He will think about what is next and let me know. What this means is after arm radiation, I will get at least two weeks.

My mood is already better. Tired, but now thinking of other things to do.

He increased the fentanyl patch by 12 mg a dag (now 37 mg) so I don't have to take as much dilaudid, soothe constipation and bloating can start to go away.those sgmptoms are better, but my tummy still cramps.

My CEA was 20, which could indicate both tumor growth as well as tumor death. My interpretation is both. There are spots on my chest growing, but radiation is also killing cancner cells. The CEA has. Een as high as 50. So, it could be worse.

I am relieved I get a bit of a break. I will also get a ct scan to see if Nything else is brewing -will try to schedule for next week when I am stronger.

P.S. I forgot

Remember the blood in my urine I have had off and on for a couple of weeks? I have not had it since Friday since I started drinking Gatorade for electrolytes. When they drew my blood, they said that if anything, I was over hydrated and needed more potassium and sodium.

Glad that is one symptom gone.

Herceptin tomorrow

I was supposed tom have Herceptin and Zometa on Friday, butnright before my radiation treatment, my stomach got so bloated and was cramping that I was in tears the whole time during radiation. The docs wanted a blood draw, but the nurse at the radiation center couldn't get a vein so I wet to Ambulatory Infusion. The nurses there are upset I had the port taken out since it makes it harder to access a vein but the kink in the catheter, pain and loss of range of motion was too much.

The new symptom was like the one that broke the camel's back. Other side effects I have are:

- fatigue
- pain in my arms and shoulders
- yeast infection in my mouth
- constipation
- occasional headaches when the steroid wears off
- lymphedema
- arm wound is weeping lots of fluid so after awhile, my shirt gets wet
- bald
- weakness and shakiness
- numb fingers in my right hand - the shakiness makes it hard to write, even my signature

Meds that I am on to counteract side effects:
- steroids (but weaning off them)
- dilaudid
- fentanyl patch
- occasional Tylenol, for the headaches
- Valium to sleep mat night
- medication for the yeast infection
- gas-x for the bloating
- stool softener
- Chinese herbs
- probiotics
- an acid reducer

I am feeling a bit better today, although I may have stayed up too long cuz my left arm got swollen. Laying down with my arm elevated helps with the edema as well as the pain.

I am worried about getting through Herceptin tomorrow as I couldn't handle it on Friday. Just worried about being comfortable through it. I also have radiation (6 more sessions) and will see Dr. K. But I got through Friday as I was away from the house for three hours and had calmed down by the time they drew my blood. So that is how ai will get through tomorrow - one thing at a time. I think I am also supposed to get my CEA.

My dad has been great about getting my meds. Eddie has been understanding, too. And I think that I am a tad better today than yesterday. So I will continue to take things day by day. I have much to be thankful for - a supportive family, a great care team (the radiation nurse stopped by at home today and yesterday to change my dressing - send her blessings, too).
Thank you so much everyone! Life is still good. I hope to get outside some to enjoy the deck and maybe entertain visitors. Thank you all!

Aggressive treatment

I saw the doctor yesterday who assured me that I am strong even if I don't feel like it. She said radiation is very aggressive treatment and at the moment I need all the rest I can get to heal.

She also said that I should be in no hurry to go off the pain meds because the more comfortable I am, the better I heal. I should expect to be tired for several weeks and will probably be on pain meds for awhile.

I asked why my hands shake and ahe said I am probably just weak now because my body is doing so much to heal from radiation.

My acupuncturist told me that this is my most challenging time with this disease and reminded me that now I am in a very yin time - I just need to hole up and rest. But yin eventually turns to yang so eventually I will gain more energy. The only constant is change.

I occasionally get blood in my urine and I think I notice it more when I don't drink as much water.

The wound in my arm is weeping more, sometimes with more blood. The tumor is shrinking, though.

I get Herceptin tomorrow. Hopefully that keeps other tumors at bay for awhile. Imreallymstart need to gain strength.

The doctor said fact that I don't have an infection and am maintaining my weight is good.

Please let me get through these next 8 treatments. Injust wish I felt better.

Living with pain

As I am trying to recover from the WBR and the arm radiation, mostly by resting, I do live with constant pain. I mean, the fentanyl patch takes the worst of it away, but I do take every 4 or 5 hours for the arm and shoulder pain. I keep heat on my right shoulder and back but the front of my right shoulder, my bicep, forearm, and sometimes my right wrist hurt, so I keep heat on that, too. I guess the idea is to be comfortable, so I try to domthat as much as possible.

In the meantime, dad has taken over some duties tom take Ed on outings. Eddie is at swim swimming lessons now. I have said it before and will say it again - thank goodness for family!

I just wish I wouldn't tense up ny right shoulder. Not sure why. Well, anxiety, I guess. But I should concentrate on rest nd recuperation now, then worry about the anxiety later.

I plan to ask Dr. K not to start any heavy duty chemo for four to six weeks. I want to gain strength first. I will just do Herceptin and Zometa for two more cycles and then see whatnis next. I have Herxeptin this Friday. Hopefully that will keep things under control for now.

I continue to be thankfulmfor everyone's support! Thank you!

Turning point

I decided a couple of hours ago that today will be a turning point. Nowhere to go but up, right?

Eddie and I had a good talk today, good for both of us.

Friends continue their outpouring of support. Thank you for that.

The radiology tech, Tim, was a complete sweetheart and met me both yesterday and today to change my wound dressing. I really couldn't ask for a better support and care team.

Love to everyone!

Being Truthful

Yesterday, I decided to be truthful on facebook and got such an outpour of support that I wanted to say thank you.

My dad says I always put a good face on everything and mentioned that no one else really sees what I am going through. In the end, this week, I have been crying a lot and worried that I am on a downward spiral. Dad reminded me that my blood counts are good, the tumors aren't growing, and I am doing treatments to keep more things from growing. My weight is stable, too.

But there are side effects, including pain and fatigue and nausea. The nausea and fatigue should start going away in the next few weeks. I am not sure of the pain, though. I hate being on pain meds, but if it means I can start operating somewhat normally soon, then so be it. I am on the fentanyl oath, but take an additional dilaudid every few hours. Dilaudid makes me tired, which is okay for continued rest.

I am not really good company right now and sorta just want to hole up at home and rest. I will let people know when I am feeling upmto visitors. Thanks to Jeanne for giving me permission to be lousy company.

As people remind me, I have been through a helluva lot these last few months. Four surgeries, pus three weeks of radiation with two more to go. I will ask my parents today to do a light massage on mt left arm to try to move the fluid into my back and lessen how fat my arm is. That might help decrease the pain. I think the numbness in my right middle finger is better, but it is hard to tell. Because of the numbness in my right fingers and the swelling in my left, I can hardly lift anything.

I just hate feeling so weak and shaky. But time heals, right? Just got to give it time.

Thank you to everyone for reminding me of my strength. I don't feel strong,but maybe now I am drawing on that strength to get me through the next few weeks.

Another big thank you to my family for helping me and taking Eddie on outings. I hope to do that again soon.

Saw the Doctor Today

I saw the radiation oncologist today. In the end, no infectionnin my bladder and my blood work is fine. No idea on what caused the blood in the urine, but as I said earlier, no ibuprofen and no diet pepsi. A very good friend scolded me for even drinking it - thank you!

The biggest concern my doctor had was pain management so she talked with Dr. K and it was decided that I should wear a fentanyl patch. It is longer lasting and releases medicine over three days. It should help with the arm and shoulder pain. At the moment, it gets better for awhile and then hurts, so this will get me more comfortable over the long term. Maybe in a couple of days, I can get back to more normal activities.

I will keep you posted on the patch. Good night!

Didn't sleep as well

I didn't sleep as well last night so I think I am going to lay down and rest again. I took two dilaudid about an hour ago and it is catching up to me.

My shoulders are extranachey this morning and I think the dilaudid is finally kicking in and helping.

I ended up with bloody urine again lad night. Now I think it might be related to diet pepsi. I had one Sunday and ended up with bloody urine through the night. Inhad one yesterday and now I am having it again. So no more diet pepsi or Ibuprofen at least for the next week or so. And more rest.

I need to pay bills later today. But rest first. My last WBR is today. Thank god. Mom wanted to celebrate but I think that needs to wait until I have more energy and maybe less pain.

I may be really tired now and not doing much. But on the whole, I think I am doing much better than many. If I can get through the next few weeks, I can start gaining strength and energy. Then the attention will be on keeping this crap under control. I have a son to raise.

I am just happy that my family is here to help me so much. Seriously. All I do is go to radiation, eat, sleep, and rest.thank goodness for family to help!

No more ibuprofen

The doc at the radiation center took my blood and a urine sample yesterday, but by the time I got there, the bloody urine has gone. We figure it is the Ibuprofen, which I took on Sunday. They alsomsaid I could take a second dilaudid pill so I age been alternating two with one to help with pain.

I cried a lot yesterday, especially at the radiation center. I can't wait for the WBR to be over. Two more sessions. Then I hope the nausea goes away and I just have to deal with the pain from the arm radiation. 15 more sessions of that.

No tears today so far. That's good.

My hair is falling out from the WBR. I expected it. Maybe in a month it will start growing out again.

Still constipated from the dilaudid. I take a stool softener and Chinese herbs for it.

Oh. I found out that I will start having to pay for my health insurance in October - $500 or so a month. And Eddie's social security benefits will also be deducted from my long term disability payments. I need to figure out monthly expenses here soon. We will be okay, but money will be tighter come October. I have extra now, so will save up. Nice to know what the finances will all look like finally so I can talk to Eddie's dad.

A new symptom

After a weekend of rest from radiation, I hardly have any nausea. I do, however, have more pain in my necks and shoulders, mostly left but some right, too. So sometimes I take another dilaudid, which is in acceptable limits. It says to take one pill every 1 to 3 hours for pain. I usually take one every four hours. But last night, aboutn3am, I took dilaudid, the anti nausea med. And Tylenol and ended up with bloody urine since about 4:30am. Thisnhappened twice last week, too, so I stopped taking Ibuprofen (did take a dose yesterday afternoon). I hope it is just a combo of meds on. Nearly empty stomach, ut will talk to the nurse today, especially if the bleeding persists.

Only three more sessions of WBR. And 16 more of the arm. Hope the arm pain starts fading more later in the week. I think if I can get through this week, I should start going up on the energy front. Now, I eat, watch TV, rest, sleep or nap, and rest.

Eddie is home and I am glad for that. He stutters less here than with his dad and seems to enjoy just being his own company. My folks have said that they will try to take him on some outings a couple of times a week while I rest from the treatments.

10 out 15 WBR completed

I have only five more sessions of WBR left and then will take a couple of weeks to wean off the steroids. I am on a low dose of steroids so am eating mostly normally, with a couple of Zofran thrown in each day for nausea.

I didn't sleep as well last night, but toward the end. So still resting a lot during the day. I am glad Ed is with his dad although I miss him very much. He still gets to do fun things that I couldn't do. I take a Valium before bed. But the first couple of the hours in the morning, I do have some pain and stiffness in my shoulders.

I might be more energetic the week after next. We should see some improvement in the tumors in my arm by then, although I am not sure of the swelling.

Since I don't know what the future will bring I. The next couple of weeks, I am not worrying about it.

I have been blessed by the generosity of friends. I received a book by Pema Chadron yesterday called "When Things Fall Apart", from one of my oldest and dearest friends. Thank you, P! Also a colleague has started my Stockton, California trip fund with a $200 gift. Thank you, N! I don't even know if I will get into this trial or not, but every little bit helps.

Will start arm radiation tomorrow

I went to radiation today and thought that I would start arm radiation along with WBR today. In the end, they weren't done planning and have apparently decided to do 20 sessions instead of 15 so they can do a lower toxic dose.

So the next four weeks will be eaten up by radiation.

I hope that those sessions won't be as bad on me as the WBR. I only have seven more sessions of that.

Otherwise saw the physical therapist today, who stretched my arms and shoulders.

In the meantime, the floor is done on the deck. Yay!