More Than We Can Handle?

I had a follow up dr appt today. Here is the latest news -

*Bone MRI's came back totally clean. Again, we know what it isn't, but still don't know what it may be

*Since starting chemo almost 2 weeks ago, I have been experiencing severe, constant headaches, even to the point of full blown migraines. Neither Dr or PA can find any cause, both sure it is not the chemo or the tamoxifen. My labs say that I should be totally fine. Although I am not experiencing previous side effects, I am experiencing pain and current concerns. Again, my PA was totally stumped as I described my most recent migraine and my inability to manage it. She talked with the Dr and they both concur that a brain MRI is the next step. I will be waiting to hear from the MA next week to get that scheduled.

*We again discussed surgery recommends and options. I will be coordinating ovarian surgery through the OB office. This surgery will ideally replace the injection that I had the worst side effects with. Post surgery will also change me over from the tamoxifen to a similar, but different cancer med that would become my long term, post cancer med. We are hoping to get surgery out of way sooner vs later. We will just be waiting to coordinate with specific dr on the OB team.

*Confirmed a 3rd round of UTI today. I am getting good at figuring it out and getting labs to confirm. Cute lab tech says it isn't just me. She sees similar in lots of cancer patients. Well, there is at least one thing I am going with the flow instead of against it :0 I will be back on antibiotics for another 10 days.

*Today I have some extra swelling, esp in my hands. This concern prompted a full check up to make sure it wasn't because of problem areas. Again PA was concerned and stumped. Will just keep an eye on it for now.

Because of today headache and a number of things, we missed dance class again tonight. Probably could have braved it out, but would have constantly been focusing on pain management and not "wearing it on my sleeve" instead of on friends and teaching. I definitely shed some tears today.

Days like today seem so overwhelming, esp knowing that heredity is playing a part in all this. When my PA mentioned the brain MRI, all I could do was think of and cry over my sweet, wonderful aunt who died of breast cancer that created a brain tumor. For that moment the fear was very real.

Then I think about the other part of my day, talking with the sweet receptionist who has been with through things with me from the first time and the sweet sister who was my driver, about living in a day when we can do more about treatment, when there are lots of options, when I am surrounded by staff at every level of my treatment who truly care about me. I think about walking out the doors of the cancer center to sunshine, and consciously saying thank you for all the the gifts I have been given and the people who surround me with love. I think about the note to a friend when he wished to take this all away, and my response about all the miracles and tender mercies and people that heavenly Father has again put in our path in the midst of all the crummy stuff.

Yes, this whole thing, plus current concerns, plus knowing it is going to get harder before it gets easier, is totally 100% crummy. That being said, there are still lessons to learn, still tender mercies to come, still medical staff who love me and my family, there are still zillions of prayers in our behalf, there are still people to meet, there are still lives to be touched - my own and others - there are still thank yous to be said - to heavenly Father and so many others - there are still thanx treats to make (thanx to my awesome son), there are still days to play in the sun and leaves to kick up, there are still so many good things to come. We will keep striving to remember - come what may and love it - elder within did, so can we, one baby step at a time.

MRI Update

Just thought that I would post a quick note about my day.

Unfortunately I lost both my babysitters due to illness. Our kids are sick too. Then a certain child freaked out because I was just going to drive myself. I had to call Preston to intercede...sigh...Ended up piling all the kids in the car to take me down. I got dropped off and they all returned home. 

I arrived extra early knowing that I needed labs. Full oncology panel plus the cancer marker and one other thing that is being tracked. Labs still were not done by the time I was leaving today.

MRI was interesting. Picture yourself with your arms/hands pinned to your side, hot packed on one side and an emergency button in the other. You slide into this tight tube with the top barely above you. The test includes VERY loud beeping and ringing and zapping sounds. 

My saving grace? A set of headphones with music playing, and the fact that while the machine is on it creates a cool wind tunnel. I also kept my eyes shut the entire time. Heavenly Father sent all the right things for me to be in that crazy loud wind tunnel for 2 hours....

The tricky part of the test, of course, was trying to get the IV line in for the contrast. I had made a request up front for a hot pack and IV person. Same IV gal that I had last time responded to their request for help. When she couldnt get me on a first try (and left an instant nasty bruise) the MRI tech verbally expressed his happiness at listening to me that he had called the tech and didnt try himself. IV gal went for exact same spot she hit last week. She still dug and will end up with bruising again and it still stings after all these hours....

Preston ended up rescuing me to bring me home. I called to check on the status of things, but labs werent ready yet. If there are big concerns, I am assuming that we will hear something before friday if there are big concerns. I will have a follow up appt @ dr office on friday.

Just a quick update about chemo too. I am experiencing some nausea and migraines. So far, I am not flat down sick like with the lupron. Hopefully that is a good sign.

More to come on friday

A Very Long Day

Today started at the oncology office. We again discussed ovarian surgical options. My  w still wants to try a couple other things before we head that direction, but she feels that is probably going to end up. We have dropped the Lupron (the estrogen suppressor) and we are going with starting chemo again today along with the tamoxifen. CT results are inconclusive. Verified no new cancer growth in any other places, at least that we can tell for now. The MRI next week will specifically look at my bones from my pelvic area and up my spine. Should have much more detailed picts then. When I left the office we went away with a plan to start chemo and to forgo both injections so we can isolate the chemo and see if there are any excessive side effects. Before I left I also did another whole big set of labs. We called it good, and left with an appt to follow up next week after MRI.

Ceana and I ran some wedding errands and were still down in town an hour later. I got a phone call from the MA who said my labs were not ok and that I would need to get to the infusion office tomorrow - we were still there, so I asked her to check with the infusion office to see if we could come right then. They had an opening within 30 min, so Ceana and I headed back to the cancer center. The MA said that I would need fluids and to go ahead with the bone protector injection. My calcium levels were outside the window they want, on the high side. My understanding from the MA was that my calcium was too high because there was growth of the cancer in my pelvic bone. Talking with the infusion nurses, they explained that my calcium levels in my blood were too high - thus the IV fluids. Maybe a little of both considering I have been off of chemo for more than 4 weeks, and missed the bone protector injection 2x in a row. That seems to make sense, and I guess really determines that the treatment plan we have in place really is making a difference.

The infusion nurses are darling, and I had one of my nurses from when I was sick before. She was great to talk me through everything that was going on and why, plus we talked about everyday things to kind of keep me distracted. We found a new IV site on my arm, so hopefully we can hit that same spot next week for my MRI. They were so attentive too. I went into the infusion floor totally roasting and not cooling down. They brought me a baby fan and ice chips. Both helped tons. We chatted the time away - ended up being 90 min by the time I was done. Also in the midst of this, a dear friend had taken the kids for me, thinking it would just be a few hours, and instead it ended up being the entire day. Don't know what I would have done without her support and her willingness to keep the kids for me for so long. She is such a blessing in my life for tons of reasons.

So, our go forward plan - starting tamoxifen and chemo again today. Bone protector injection today and scheduled again at my appt in a month. I am to increase my fluid intake, but not anything high in calcium, to try to continue to dilute blood calcium levels. MRI is next Tues, along with another whole big set of labs to follow up from today. I will be keeping a very detailed journal to track any side effects that come from chemo over the next month. Preston reminded me to for sure include any good days, or positive things in the journal too. I tracked all the yucky stuff in the last month, but not many positive things. Will work harder at that.

Thanx to everyone who continue to give your help and encouragement and support. We feel your prayers and your love and we know that these things are helping to sustain us through these rough patches. Know that we appreciate you all so much! Next update will be on Tues next week. Will keep you posted....thanx for sticking things out with us still!

Can You Say Pincushion?

Hello again!

Today was finally date for my CT scan. So thankful to a friend who was my chauffeur today. I was not doing OK enough before or after my test to drive. So grateful to those who drive me to my appts.

We arrived early hoping to give the techs enough time to get my IV line in. We ended up needing that extra time and more! It took 3 techs, 6 pokes, and 1 hour to finally get the IV line in and running clean (saline has a odd taste)

For all their work, it literally took 5 minutes for the actual imaging to be completed. I had forgotten how the iodine contrast works, felt like someone put a hot, heavy weight against my throat and on top of my chest. I had to physically and consciously make myself breathe. Probably a really good thing the imaging was only a few minutes, and I can totally get why people throw up. It was not a good sensation.

My tech was really patient as I needed to just sit for a few minutes when I was done. I was shaky and still having a hard time breathing. She was nice as she regaled me with her crazy cat stories. When I was finished she said "Well, my pincushion friend, you are all done!" - Thank goodness!

I finally got the call to get my MRI x 2 scheduled. Dr ordered lots more specific stuff this time. Thankfully they can do both tests back to back. Will make for a long day. Will be thankful to get it out of the way and hopefully know how to move forward.

I was happy to do some good today in the midst of the craziness. Several people have helped us again recently, including on call pediatrician. It felt good to do something to say thanx to them.

OK. That is all for today. I have an appt on Tues. Will report again then.

OCTOBER UPDATE EXTRA NEWS

I got a message from the dr office today which led to a follow up phone call. Apparently my back concerns are more than just a concern. Oncology dr is ordering pelvic and lumbar spine MRI AND special CT imaging that will include using dye contrasts. Will be so lovely to see how many times the poke me to get a line in. Nothing on the schedule yet, waiting on insurance of course, but nurse at the office didnt see any reason why everything wouldnt be approved and able to be scheduled this week.
Hopefully will be able to get all the testing done long before the wedding...sigh...just gotta always be something, and never anything small...

Stay tuned for more info....

October Update

The last 2 weeks have been extra rough. This weekend was really bad, so much that I was so sick we missed all our weekend events.

I had issues with my back that finally warranted heavy pain meds. I got into a hot bath and let the jets just kind of beat on me. It was extra good that Preston was able to be home with us all day on Sat because trying to dry off/clean up, I slipped and fell right back into the tub....sigh....I have spent most of the last few days on pretty heavy pain meds. I am so thankful Preston was home and I was just able to let myself be drugged. He was extra worried enough to send a note off to the dr office to let them know I was not doing so good.

Yesterday I had a couple of "check up" appts - things mostly went well...

I was able to talk with one of my specialists about oncology surgical options. I was much relieved after talking with her. Initial conversations led me to believe surgery would be like C-sec as far as surgery and recovery. I was so thankful to learn that it really would be more simple than that, including maybe a couple days in the hospital and up and around within a week (vs being down 6 weeks). It will be big part of discussion with the oncology team next week.

The other appt was with the oncology nutritionist, and the oncology MA. Found out that the pain med that I used over the weekend is slowly being phased out. It has been linked to high risk of seizures, and esp high risk since I went through that before during treatment. It is being taken away/thrown away. I expressed my concern of that leaving only 2 pain meds on my ok list, even for surgeries. She was adamant that the other one must be taken away. The other big info she shared was a plan to go forward with more specific imaging for my back concerns. I will be scheduled for a dye MRI and a special contrast CT. They are looking for something more than showed up on my images from April. Thankfully one of the nurses is totally on top of We talked about several other things, but unfortunately my brain didnt retain anything except about the pain med. Hopefully I will remember soon. 

Some extra information that I have found out today. The dr office did call to confirm what I suspected was happening over the weekend - UTI - so adding ANOTHER med to my revolving pharmacy...sheesh. Also was given some random family genetic info today. When I went through cancer treatment the 1st time I pretty much crashed and burned and I experienced some severe seizures. Never found a cause for those. After that happened I have had hand tremors for all these years. With starting cancer treatment again, and again experiencing severe side effects, the trembling has increased, esp in my left hand. I have been put on a special med to try to tame the tremors and also my heart rate that seems to want to skyrocket all on its own. Found out today it is not just me on treatment - it is actually a hereditary trait that goes back at least 1, and maybe more generations. Wont my drs be happy to hear that it isnt something that they can fix, but hopefully at least keep tamed. I am told to expect this to get worse as I get older too. Loverly.

I had a nice chat with the nutrition specialist. We discussed trying to take and look at a whole picture, vs only focusing on diet and weight - both of which are a huge struggle. I felt more encouraged and will be happy to "throw away" my scale for awhile. Will just keep trying to make healthy choices and exercising when I feel up to it. I will try to not get discouraged when things arent going so good. It will continue to be a work in progress.

Yesterday I was feeling better enough to go shopping with ceana for wedding clothes for me. After lots of looking, I found a top that I really love and that is going to look great. It doesnt match any of the wedding colors (thanx for a tip from a wedding momma friend) but Ceana & I think that it is going to be great. Though I am super sore, it felt good to be in the sunshine and walking on my own.

I hopefully dont have anymore appts this week. I will post another update next week after big oncology appt. Thanx to all for your love and support as we go through these current trials. 

rory

Unplanned Update

Well, I served up curve balls again today. All my symptoms plus extras threw PA for a loop. There are big concerns from Dr and PA that side effects have been so bad. One side effect that has really had me down may not be a side effect at all, but a concern with my spine/back. PA did a quick exam and when she hit a couple places on my back I about jumped off the table. Not sure what the plan will be though. Talked about estrogen suppressant surgery options. If I do go in to have ovaries and tubes taken out, would be multiple day hospital stay and 6 weeks totally down - cutting through abdomen, uterine area - would be just like having another C Sect. That was not fun the 1st time, would take some very big planning to try to figure out if I was down because of surgery and cancer etc. My heart rate was too high again today too.....sigh...like I said, lots of curve balls.....

So - here is the scoop for next 2 weeks. Still NO chemo, NO tamoxifen. Next appt on 18th will determine if injections are also put on hold again, whether I will start chemo, and big discussion about possible surgery to replace injections. On a good note, labs came back with good #'s, so they are happy about that not being out of control too. Too bad that my #'s dont reflect how I am really doing. Will be glad for one thing that is solid.

I am extra thankful for friends today. A special someone to drive and a special someone to take the kids. Little peeps were happy where they were, and I got some adult talk time. So thankful to those who give so much to help me and our family. The not driving thing has really been a huge struggle for me. I am grateful to those willing to serve our family.

Will post again in a couple of weeks. Thanx for staying tuned....