Wednesday, March 21, 2018

Hard times

I am a self titled "annoyingly optimistic" person.

Sometimes I might even be a bit delusional when it comes to certain situations. Hmm....honestly I don't care.

Just like I don't care when I have to admit that I am down, feel SO tired of being sick and tired (literally) and feel into a major funk last week.

11 days ago I tested positive for Flu B. I thought it was a graft verses host (GVH) flair up...nope...the flu.
That was Friday.
Spring break started that Friday too.
All I wanted to do with my son took a backseat to the flu.

My toes were starting to dip into the dark waters of despair and hopelessness.
I just couldn't help my anger.
Anger at my body for being sick yet again.
Anger at my mind for not being able to look for a little slice of something good.
Anger that yet another vacation was going to be dictated by my lack of health.
I was angry.

We still went on the ski trip that was planned. 

I was able to sleep most of the way there there (9.5 hours), but the higher altitude completely took every last ounce of energy out of me.

I stayed in the cabin and slept the first day while Eric and Ian went snowboarding. And seeing and the excitement on Ian's face while telling me about it took all my sadness away.

The next day they came home from the mountain and we all went to lunch together, then I went to the mountain with them to watch them board...which was great!

I was exhausted.

The 3rd day, they went to the mountain in the morning, came home for lunch and Ian decided he didn't want to go back because we was beat, so Eric went back solo.

I don't know when happened in my mind...I started to have a panic attack...not sure why.
When Eric go home, I broke.
I was exhausted.
I was an emotional wreck. 

We made it home on Sunday and I was SO happy just to be home. I feel comfort from my home. I feel safe here.

Monday my mom came over because I was falling apart.
I couldn't seem to pick myself us much less hold myself together.
I seemed to fix one crack only to have another one break open.

Tuesday I woke up with a swollen eye. I think I had something get in my eye the night before and but I was so DONE with shit!!

I had a Dr. H appt (just my monthly appt) and continued to crumble. I don't what it is about her that makes my walls crumble...she just makes me feel safe.

I did a healing mediation, went to sleep, had lunch with Eric and Ian got home and I could FEEL my soul starting to smile again!

Once I could feel a slight crack of a smile in my soul, I let the floodgates open and let it rush in!

SO I am happy to say...I FEEL GOOD!! I still am not all the way over the flu (this stuff is rough), BUT my heart feels good and I am ready to get back in the ring of life again.

Wednesday, March 7, 2018

7 years LIVING with Metastatic Breast Cancer

Tomorrow will be my 7th year of knowing that the Stage 1 Breast cancer had become Metastatic and taken up residence in my lungs.

It is crazy to think about this.

Gina and Syl remember this event as vividly as I do - or probably more so.

Friday, March 11, 2011

At least I can laugh….

Tuesday, March 8, 2011 
9:23 a.m. I received the call I never wanted to receive again – Texas Oncology calling me to tell me that something on my CT scans came back and my Dr wanted to see me ASAP.

My plan for the day was to go to the gym with Gina and then head to Central Market to let the kids play. Well, the plan changed. I called Eric almost about to throw up telling him he needed to meet me at tx oncology at 3:30 and then called Gina to tell her to come over and she needed to watch Ian at 3:00. Fast forward to Central Market, we let the boys run and play, ordered food and a glass of wine and headed up to our usual spot on the outside upstairs deck to have it all to ourselves.

15 minutes later, a women’s head peaks out the door, “wow, it is nice out here,” she said. “It is a great place for us to let the kids run around, and we enjoy lunch,” I say (FAIR WARNING in that statement with me saying “let the kids run around”). Fast forward another 15 minutes, we have food, a glass of wine due to the call earlier and the boys are well, being boys. The one woman has grown to a group of 4 or 5 not really sure. Well Parker and Ian think it will be fun to yell at the nasty birds and honestly I don’t care at this point – more than don’t care, I don’t give a F*CK what others are thinking at this point. The one old lady at the table says, “they are hurting our ears” “well, sorry – we were here first, we sit out here for a reason, and they are just being boys,” I say. Gina and I continue to eat, the boys continue to munch and run around. They start hollering down at BB and the old lady comes over to us and says, “You don’t own this patio” (REALLY??? You think we would actually be eating here if we did??!?!?) “blah blah blah” (at this point I totally tuned her out because I wasn’t having it) then I snapped, I was done. “You know what, I received a call from my oncologist telling me I have cancer for a second and at this point I don’t care, I don’t care what they are doing and I don’t care if it is bothering you” “well, I am on codeine – we all have our problems.” Then me and Gina just laugh, we can’t help it we just laugh. I wish I was on codeine and I sure as heck wouldn’t be acting like that!

Sylvia gets there at the very tail end of the “confrontation” and Gina and I are laughing and crying, Sylvia has no idea what the hell is going on and I just want to drink more wine. And that we did, I went and bought us a bottle, and we sat out in the sunshine and enjoyed ourselves.

3:30 Get to oncologist and feel like I am seriously going to puke, still a little buzzed and just pissed. Eric and I try to pass time by playing each other in words with friends – I guess it helped the puking feeling. Got called back – SH*T, here we go. Got weighed and am down another pound (whoot whoot!) and more waiting. Knock, knock F*CK, it is real. “Hi there, can I come in,” she says, “I guess.” “So, have you been feeling okay” and right then I knew. “Well, I have been having trouble breathing but I thought it was seasonal asthma/allergies”….you thought wrong sucker.

She said there is a chance it is some random infection to which I said, well a child in Ian’s mother day out had whooping cough. “Have you had a cough?” “No” “Not whooping cough…” yes, I was grasping for anything.

From this point on, I am not really sure what was said and the best Eric and I can piece together: 2 masses on lunges, one on each; might be wrapped around a blood vessel and limp node, some smaller areas of concern but aren’t called lesions. She told me we can’t know it is cancer until we have gathered all our facts, which will be in my lung biopsy. 

Here is what I did hear, the sadness in her voice when she told me to gather my support system because I was going to need them and the love in her hug as I broke down in her arms. Pull it together to walk out and start scheduling everything. On Wednesday: lung Dr at 9:30 & head MRI at 2:55 and on Friday, PET scan.

Leave, very shaken trying to decide who to call and what to do. Call mom, ask her if she can talk and am pretty sure before she even answers me I am a puddle on the phone and probably not making much sense. Texted Gina to have her get Sylvia and Teri and all them come over at 8:30 after kids are down. Eric and I make margaritas and let Ian eat dinner on the couch. Girls come over at 8:30 and drinking wine commences and goes on for awhile.

Oh, funny side note, Gina told me, “Girl you got Sylvia to pray for the first time today – you got the atheist to pray!!” Again, at least we can laugh.

Tuesday, March 6, 2018

Post Bone Marrow Transplant

I can honestly say I never read all the warnings of what could happen with medicines, especially chemo…I figure why set up a list of maybes in my head?

Because those maybes creep up in my mind too easily.

SO, I figure until something is right in front of my face, I don’t need to focus on it. BUT, I only think this way when it comes to things that could go wrong…I LOVE to think/visualize about what could go right!

I am having another post bone marrow transplant Graft versus Host flair up. It seems these are coming up closer and closer together.

I also just started seeing a new post-transplant doctor. Although I LOVE Dr. B, driving to appointments 100 miles away was becoming a pain with my husband needing to get off work to drive me. I can’t drive long distances because I get super tired from the mental work it takes me to drive…crazy.

I just had a flair up not even 3 weeks ago – honestly I think it was 2 weeks ago but my timeline is screwy!

I haven’t asked for prayers in a long time, but I am feeling a nudge to do so. Please pray Dr. R (my new bone marrow doctor) figures out what is going on and has a quick and easy fix for me!

It is hard to do this back and forth dance between feeling great for a 10-14 days only to feel myself sliding backwards to where I just climbed out from.

Tuesday, February 27, 2018

Living with Graft vs Host

My fun never ends!!

I have developed (I guess that is correct word?) Graft vs Host from my bone marrow transplant.

What does that mean?

Graft is my new bone marrow...contains all my immune and blood cells in body.
Host is the rest of my body - my original DNA.

Graft immune cells are over active because they were activated to fight off my cold but they stayed on when they should have turned off. NOW they just attacking my body...mainly mucus membranes.

Where are membranes?
All the moist (hate that word) areas in body. My eyes, mouth and genital area are super dry and irritated.

I went a new post transplant doctor today, so I can more easily manage these effects without needing to drive to Dallas. 

I am excited about making a few changes and seeing a vision of me being completely healthy!

Saturday, February 3, 2018

Happy because I have a cold???

You might think I have lost my mind saying that I am happy to have a cold this past week AND that my husband now has it!

Stick with me here.

I am elated that I got this cold from traveling last weekend... we were able to go to my sister’s, go the fair (probably where I got said cold), see my dad and watch both nephews basketball games.

Don’t get me wrong having the cold has sucked. I couldn’t go to Pilates all week and felt like crap...BUT it was never talked about me needing to go to the hospital in case it was pneumonia. I was able to stay home and sleep if off. My friends picked up my son and my husband picked up my slack.

Now he has the cold. And not that I wish him ill BUT I am able to hold down the fort while I get to let him rest and recover without him having to worry about me in addition to trying to get better.

I get might have thrown up a little in your mouth from my positive outlook BUT from where I was to where I am now I honestly cannot help myself.

What situation can you try to look at from a different view point??

Tuesday, January 23, 2018

Brain Surgery cavity MRI pictues

I had a Dr. Groves (brain oncologist) appointment today to go over the results from the MRI from new symptoms were happening - he just wanted to follow up from the MRI 6 weeks ago where things were looking "different"

^^^^^The size and placement of the monster tumor that caused THREE brain surgeries to remove. Fun fact - did you know when breast cancer metastasizes, it breaks off from the breast and can move to the brain, lungs and liver?? I didn't know that either until it happened to me!

Back to the MRI.
Let's just say I have never seen Groves SO excited over an giddy excited!

Bottom pictures you can see I ACTUALLY have a hole in my head.

BUT what is the hard part for us non doctors to see is the white part around it (what we were needing to watch)  IS SHRINKING!!! SO that means it is scare tissues AND it is healing!!

AND I and I am saying (NOT ANY OF MY DOCTORS!!) but I think me using CBD oil is helping because it is taming the inflammation. AGAIN - MY THOUGHTS ONLY.