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Lots of new stuff

I'm still in the hospital. A biopsy on Tuesday showed cancer in my lungs. My lungs held out for as long as they could but I think they were weakened by the constant pneumonia.

I restarted chemo and am still on antibiotics. I am still on oxygen although I'm using 8 liters instead of 2. I also have to use a Bi-Pap machine at night to keep my lungs inflated. Walking and standing got to be too much so I had to get a catheter. Not what I wanted, but not feeling like I'm choking every time I stand is worth it.

I cant wait for my lungs to heal so I can breathe and walk on my own. Its coming, I just have to give it time. It's really just my lungs, everything else feels good. Breath is just so darn important!

The medical staff here is so responsive and caring, thank God I made this decision to come here. I know I'm in the right place.

A very good friend of mine passed away this week and that has been difficult. Every one of my doctors has sat with me and talked about it with me, allowing me to grieve and reassuring me that my grief is natural and they want to help me thru it. Not just a simple "sorry for your loss", but actually sitting and talking with me about it.

I also had a 2 hour visit with a counselor to talk about my friend and also to go over the new grief I have with the spread of the cancer to my lungs and the whole summer happenings with my previous oncology group. It's all here for me, and it's awesome to feel this much support & to just have an outlet to talk about it. I feel like my body and soul are being cared for, and as strong as I try to be, it's so nice to have someone to share the load with.

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Back (but not in the saddle)

Im back, back in the hospital again. After doing okay the first few days, once my antibiotic stopped, two days later i spiked a fever. Standing up and just some talking was difficult, and with the fever we called CTCA.

So im back in the hospital, back on IV antibiotics and fluids. This morning & this afternoon were tough. But after my third dose of antibiotics i am starting to feel a little difference.

Im going to be in here all weekend, resting and healing. I am seeing my pulmonologist and infectious disease doctors. I believe they will do another bronchoscopy Monday if none of the other tests they've done come back positive pointing to something specific.

I just want it figured out so i can get healed. We stopped the chemo due to my fever because chemo can inhibit the immune system. I'll be happy when this is figured out so i can kick this cancer to the curb.

It's a detour but im along for the ride on this long strange trip.

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Ralph Waldo Emerson

What lies behind us and what lies before us are tiny matters compared to what lies within us.

Adopt the pace of nature: her secret is patience.

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Chemo take 2, day 2

I'm out of the hospital, was released last Friday afternoon. I was sent home on oxygen, and a home oxygen service came Friday night to set me up for my house. At this point I only have to use the oxygen when I am active - i.e. walking around, using restroom, and when I sleep for the night.

I can see small progress every day and that's a good thing. So many people have been praying for me and I know it's working.

I was sent home on a bevy of medications and supplements, I was on IV antibiotics, nebulizer treatments, and respiratory monitoring in the hospital and my steroid dosage was doubled. A weekly pill separator was purchased and is in rotation as I speak.

My lymph nodes that were biopsied (4 of them) in my chest/neck area came back positive, so that's kind of a relief, knowing what I'm dealing with. My oncologist and I made the decision when I was in the hospital that we would start the Xeloda (chemo) at the lower dose which would not interfere with the steroids. It is pills so I can take them at home and I started them Saturday evening, I seem to handle them well, no side effects that I can tell right now.

The biggest difference is in my mind I think. One week ago I knew I was going to have my biopsy the next morning and my thoughts were just on getting through the night to get to CTCA. I knew I would be taken care of, and I was. Now my mind is feeing calm, I feel like I am being treated for both the cancer and pneumonia and healing, and that is a huge relief.

After the biopsy, when my oxygen level didn't return to normal, the pulmonologist had me monitored closely to make sure it wasn't an effect of the anesthesia. After a few hours it was clear I couldn't get enough oxygen on my own and he made the decision to admit me and run more tests. He told Tyson that I had the biopsy in probably the last window that I could. Anymore time and my body wouldn't have handled the anesthesia. I was on continuous oxygen from Tuesday to Thursday. By Thursday I had started to take the oxygen off when resting, and I did well enough to be released Friday.

I am breathing a little easier and my chest doesn't feel as tight. The oxygen definitely helps. The pulmonologist felt that my original pneumonia didn't totally resolve and flared up again. This was probably because we tried to fast track the prednisone taper in order for me to begin the high dose of Xeloda.

I slept in today which felt good. I got up enough to drink a protein shake, take my medicine and let it settle, then just stayed in bed until 2. There's no need to rush I've decided, I'm not in a race, I have nothing to prove to anyone, just life. I want to feel better but it will come. If I rest more, then my body will be OK. Despite my plans for myself in August and September, I need to give myself some grace and time. Healing is coming, I just can't chase it.

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I'm in the hospital, low oxygen, trying to figure out this pneumonia and get treated for my recurrence of cancer. Prayers for healing appreciated. Love to you all. (at Cancer Treatment Centers of America) https://www.instagram.com/p/B1wEh5og5A8/?igshid=n6i7grbwmp1a

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D.O.E. and me

I've read this acronym enough during my underwriting days but until I actually had it, I didn't appreciate the crazy symptoms of it.

D.O.E. which is known as Dyspnea on Exertion, and from a quick internet search is a term used to describe difficulty breathing when engaged in a simple activity like walking up a flight of stairs or going to the mailbox. That's me, right now. Things that shouldn't make me out of breath are. I know that it is due to the pneumonia and I will be happy when that is fully resolved. But for the time being, it's me and DOE.

It certainly shapes my day. if I'm walking somewhere I will multitask and do everything needed on the way and not have to make multiple trips. I went to Menards today and took 30 minutes to do a typical 5 minute shopping trip. When I entered the store I checked to see if they had any motorized carts but they didn't...boo. I was going to try one out for a spin. So, I did straight walking, at a snail's pace, literally. I was definitely out of breath, and took about 5-10 minutes in my car to rest before I began driving again, but I recovered and made it home. I'll never look at slow walkers the same again.

The thing is when I am resting, sitting, or laying down I don't feel too bad. But if I try to do anything that requires physical activity, I can tell that my lungs get taxed quickly. So for now, I'm going to focus on resting as much as I can and getting as much oxygen into my body as I can because that oxygen is going to carry healing cells throughout my body.

I'm going to put on a comedy (Derry Girls, I highly recommend on NetFlix if you understand Catholic high school in the 1990s) and laugh myself towards increased oxygen and healing.

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Information Overload

The past 2.5 weeks have been nothing short of exhausting and an absolute rollercoaster. My Oncologist called me with the results of the PET scan however it was very vague. He said it was more extensive than just in my skin. He said maybe it was in my bones, spine, lungs, lymph nodes, neck...WHAT????? After all those negative tests somehow without any symptoms I have cancer metastasized to all these areas in a matter of 2 weeks?

We spoke about getting into see the TNBC specialist in Madison and I asked him how quicky that could happen. He said she was travelling right now and wouldn't be able to see me but that she would refer me to a colleague there who was a breast cancer specialist, although not a TNBC specialist. He mentioned it would happen in 1-2 weeks and they would call to set it up. I hung up the phone and did not feel good and I had a ton of questions.

I had looked up information on Cancer Treatment Centers of America and decided to start a conversation with them. I spent an hour and a half on the phone with them talking about getting a second opinion. I spoke with a scheduling nurse and an intake nurse that night. I spoke with a Nurse Navigator to provide a complete history and records release authorizations, and got set up for a 3 day evaluation for a second opinion.

LOTS has happened since then...

* The day after I got my PET scan results, my medical system called me, randomly, to do a survey. Of course I did it. I provided feedback about the surgeon (whom I will not see again), my oncologist, and the fact that i felt like my medical team who I had trusted for a year suddenly was jumping ship. I also mentioned that they didn't seem to know what to do, which is OK - just tell me that and tell me you're going to get me in front of the right people. I also mentioned that I was seeking a 2nd opinion from CTCA.

* The following Wednesday I went to a tailgate at a Brewers Game with my work friends. This gave me a much needed burst of strength and comfort. I did not attend the game however...because:

* The doctors at Madison called and set up appointments for me with the Oncologist and Radiation Oncologist the afternoon of the Brewers Game. I went to those and got some good information. Bottom line, I should have more genetic testing done on my tumor, including PDL-1 which hadn't been done yet. I should also have another biopsy based on the PET scan and where it was felt they would get the most concrete and usable information. I was praised by the oncologist for finding the 2 small nodes and acting on them right away (this felt really good). The Radiation Oncologist told me if it were him he'd hit it and hit it hard, being as aggressive as possible. I asked about immunotherapy and they said there were some trials that I could possibly get into. They would communicate with my oncologist, Dr. Mohammed and he would get back to me with his plan.

* Last Friday I had day 1 at CTCA. I met with my nurse navigator, my internal physician, the chaplain services, and insurance/billing services. The internal MD entered the room with all my records, printed out, highlighted, tagged, underlined, etc. He had done a lot of reading on me! He asked me more questions about the course of my treatment, etc. He was assembling my team and told me he was the team captain, he was going to get me in front of any and all who are needed for my care. I left that day with a sense of peace, and many more appointments & tests scheduled.

* Monday was day 2 at CTCA, I had a PT eval for my arms an for any swelling from losing 36 lymph nodes. They gave me more exercises but said overall there wasn't much and i should be proud of what I was doing. I also had routine labs (CBC, CMP, Iron Studies, and tumor markers) and an echocardiogram to monitor my heart for any changes from the chemo.

* Monday I also had a follow up with the Pulmonologist who did my lung biopsy and is treating for pneumonia. Based on increased coughing since tapering down to 20 mg of prednisone, we decided to go back up to 30 mg right now. He also went over the results of the PET scan and said there was an area of consolidation in my right lung that lit up that he'd like to biopsy to see what we were dealing with, cancer or infection. He mentioned that typically my type of pneumonia is treated with a taper over 6 months, but we were trying to do 6 weeks because i needed to start Xeloda. He said it would be easy to get to and he would dicuss with Dr. Mohammed.

* Monday I also received a call from Dr. Mohammed to go over my visit with Madison. Dr. Mohammed recommended getting a biopsy of my spine because he was concerned with metastasis to the bone, and also to biopsy a lymph node in my neck. I mentioned the lung biopsy recommendation from the pulmonologist and he said he would talk to him but he didn't believe it was necessary. He wanted me to first get an MRI of my spine however since the CT scan didn't show what the PET scan showed. His office would call me to set this up.

* Tuesday (yesterday) was day 3 at CTCA. I met with a Mind Body Consultant and spoke about that care with him would be integrated with my treatment to help me handle the mental aspects of going through this. I met with a nutritionist who went over my diet and labs and made recommendations on how to keep my body as strong and Immune as possible. I met with a Natropathic MD who will incorporate natural supplements while I am going thru treatment to combat side effects and strengthen my immune system. They also offer acupuncture there as an adjunct treatment. I met with my Oncologist and this was incredible. He went over my history, asked about the recommendations from Dr. Mohammed's team, and gave his recommendations. He brought in a Pulmonologist at the same time to go over my PET scan and they came up with a plan to biopsy those areas on the PET scan that measured the highest, they used objective data, not just a "concern" to make their recommendation. They talked about treatments and how I could be treated for the recurrence and pneumonia at the same time. I could be treated with a lower dose of Xeloda and possibly immunotherapy at the same time. There was immunotherapy approved earlier this year by the FDA that they would consider and if it wasn't right there were other immunotherapies available. They would get genomic testing on my tumor and biopsies and decide on what was best. So many possibilities and hope. These two physicians put my mind at rest which had been racing nonstop for weeks. They discussed was my Tumor Marker Results which were all normal except one whch was 4 points above the high range. They said we may be looking at very early and limited disease.

One thing the pulmonologist said was Organizing Pneumonia is very inflammatory and could cause my lymph nodes to swell and other things to show up positive on the PET Scan. Wouldn't that be something...if it was just in my skin and the rest was because of the pneumonia.

Today I am taking it easy. I made a decision to move forward with CTCA for now, I will have the biopsy next Tuesday. I am holding off on the MRI of my spine. I'm uncomfortable with having my spine biopsied, I don't want part of my spine removed. Especially when I have no symptoms. Objectively the doctors at CTCA said the lit up portion of the spine didn't register very high and could likely just be inflammation. They also said it would not be an easy procedure and the area that was wanted could actually be missed because it was so small. I agree, let's go after the most significant area and figure it out. When I asked if the treatment would change if I did have a biopsy of my spine, they said that it would not, it would be treated the same, as metastatic breast disease and treatment types would depend on my genomic testing on the biopsies.

My peace of mind is slowly returning. My helplessness is slowly slipping away, and my hope feels renewed. I'm going to be OK. I read something that said that there is no such thing as dying. You're either alive, or your dead, nothing else. It's true. I am alive and will be alive for a long time. My story is just going to be a bit more interesting...

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New mantra

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My life is a life of hope, not a life of fear. https://www.instagram.com/p/B04LD14BheB/?igshid=pzdpz59rsg5w

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Rock bottom revisited

Hitting rock bottom holds one advantage, that being once you've hit it, you know it and recognize it. So when I make my way to rock bottom multiple times, I know I am here. I don't have to wonder if I can go any lower. I know I'm at my lowest and I've climbed back out before, or maybe been lifted out. And that's the first bright light that I grasp.

Humility, which can also be referred to as putting a foot in the mouth, is alive and well in my life. And with it, disappointment, frustration, sadness, confusion, fear, and a bit of irritation.

I had my CT with contrast a few weeks ago, and it was clear. When I went to the follow up with the oncologist, I had noticed in the interim two small, very small to be completely honest, bumps near my scar on the right side (my original cancer side was on the left). I looked up some things and it looked to be a keloid or perhaps a couple of stitches trying to make their way out. I have extremely sensitive skin and some inside stitches have done just that before. My oncologist sent me to see my surgeon.

I saw the surgeon last week Monday and she removed the bigger of the two bumps. This is the life I have now, anything we find, it's going to be removed and sent for biopsy. I know this and I'm prepared for this. Friday night the surgeon called me with the results, my TNBC tumor was found again in what she removed.

Despite what I thought, it appears my tumor was never gone and it's now resurfaced, in my skin. The CT scan with contrast checked all my organs from my neck to my pelvis, with the exception of the largest organ in my body, my skin. At my appointments yesterday with my surgeon and oncologist, the information they provided was a whole lot of nothing. My oncologist said he's seen this once before. Once.

I'm having a PET scan this week to check for metabolic activity and should show the extent of the tumor in my skin. It could be right there, it could be everywhere. However my oncologist said that my pneumonia will show up as active and be a "false positive". Which makes me concerned about too many false positives or even false negatives.

After that I am being sent to a second opinion to an oncology specialist in Madison who is supposedly known as a TNBC guru. This means that the Xeloda I was supposed to start next Monday is canceled. My oncologist doesn't want to proceed until there's a second opinion on the best course. So I am in a waiting game.

I am trying to focus on the positive test results that I've had since my hospital stay, where nothing has shown tumor. I am also trying to focus on the fact that my pneumonia is improving. My rational mind says that if I have extensive cancer in my skin something would have shown up elsewhere, and my pneumonia wouldn't be improving. My rational mind says that if I have extensive cancer I'd lose weight and look sick, but those aren't true either.

But my rational mind doesn't win out at rock bottom even though it's there. The "What If's" gain the edge and take me down the rabbit hole where I'm paralyzed. It was a rough weekend for sleep and an even rougher night last night, trying to get my mind to shut off.

I need a miracle. Last time I checked, God was still performing them, which is another bright light I am grasping at rock bottom.

Prayers work and I've been at it nonstop. I am praying that the two small bumps are the only sign of the TNBC and that it is nowhere else. I am praying that the best treatment will be evident and I can start it right away. I am praying for reassurance and piece of mind. And I am praying for full healing.

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I made it. HBD to me. 47 is extra special. And so will be each next one. Thank you God for the last year. And thank you to everyone in my life, you have no idea what you truly mean to me. (at Fish Creek, Wisconsin) https://www.instagram.com/p/B0n5BezgCAM/?igshid=1xcl3tmo49xji

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Steroid Taper day 16

The steroids seem to be doing their job, Day by day I'm improving and it's noticeable - Yea! Only real side effect is that the steroids are affecting my sleep, having some insomnia and it's hard to go back to sleep if I wake up. But I only have 4 more weeks to go then that should improve.

My CT scan last week showed improvement in my lungs, but it was also of my neck to pelvis, and those results came back clear too. Really relieved to hear and read those words. My Oncologist called me the same day in the late afternoon to deliver the news and was really excited to talk to me. How awesome it was to have my Oncologist happy to deliver that news to me and not make me wait a week to tell me. I really feel like we are a team and that's a great feeling, knowing they are as invested in my recovery as I am.

For some reason while it's great to hear it from my Oncologist over the phone, when I read it on the report for myself my body does an additional calm down of a few levels. I think it's because I can see my name on the report with the results so I know there's no mistake. Those findings were really meant for me.

I feel fully validated in everything I have done so far. Everything my medical team has done, every holistic method, every meditation and alternative therapy I've tried, every prayer, every belief, everything...It's all worked. What a relief that is. I think that will be one of the anchoring mantras I take forward from here and pass on to others in my same situation, believe in what (all) I'm doing no matter what it is, because it put me in the right mindset for success.

I will be starting Xeloda on August 12 if my lungs continue to improve with the steroids. Major side effects are low blood counts, stomach complaints, and hand/foot sensitivity with peeling. The nurse said it would be similar to a sunburn on my hands and feet, and hydration will be a key to success. I've already got 4 jars of cream ready to be applied several times per day. Maybe I should just plan to fill my bathtub with it and take up residence there for the next 21 weeks. If nothing else, my appendages will be soft & well hydrated.

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It's been a week since I started the steroids and I think I'm making progress. Definitely with my stamina thru the day, and also with my coughing. I can make it up stairs now with no problem and at a normal pace. And I don't have to use the medical chair in the shower, although I must say, a seat in the shower is rather nice.

Update on the steroids, it's 6 weeks, not the 4 weeks I originally thought. So 5 more weeks to go. And my final biopsy showed no fungal infection, so good news on that front.

My brother & family were here visiting from Florida for 4 days and during those days I had no naps but still kept up pretty well. Not that I didn't take breaks, I certainly did. But it went better than I thought. Got a bit of outside time which was nicer than inside on my chair.

Monday however was a different story, it all caught up...I slept in until almost 11, then still napped & went to bed at a regular time. Tuesday was a little better wake up time, but still napped. I could say I was plum-tuckered out! But despite the tiredness I felt good being able to keep up. Healing is pulling into the station.

I'm not having a bad reaction to these steroids like I did last fall when I was going thru chemo. Maybe it was the combination of everything & all the meds at once last fall that put me over the edge. In any event I'm feeling ok with these and that's a weight off my mind.

I have a CT scan tomorrow morning, insurance didn't approve the PET scan my oncologist wanted. This will check for any signs of cancer any where in my neck, torso, abdomen, and pelvis. I know there won't be any but it's good to have a radiological reinforcement of that.

The PET scan really is something straight out of Star Wars so I'm kind of glad I'm not having that done again. It's weird. Borderline you think you're hallucinating with the equipment that's wheeled into the room that contains the injection.

The CT however, requires me to drink 2 water bottles full of contrast dye before hand... really like drinking liquid metal, for real. Last fall I just kept taking shots telling myself it was margaritas & tequila until it was all down. I'm going to have to do that again. And then maybe treat myself to a real margarita afterwards!

Haha... not yet, but it's coming.

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Post radiation day 47

Good news and bad news today...

Good news: I do not have lung cancer (insert happy dance here)

Bad news #1: I do have an inflammatory pneumonia, called "organizing pneumonia". This is in addition to the aspiration pneumonia. So I have 2 types of pneumonia at once. As the phrase goes, go big or go home.

Bad news #2: the treatment for this 2nd pneumonia is 4-6 weeks of steroids, therefore I will not be able to pass any professional athletic or NCAA drug tests. That dream is now dead. RIP dream of mine.

My next chemo will be postponed until I am done with the steroids. My oncologist & I agreed I need to be as strong as I can be when that is started. So I will begin in August.

The pulmonologist mentioned all of the fungal tests on my biopsy won't be completed for another week or so, but at this point they aren't showing anything so he doesn't anticipate anything positive coming in the fungal arena.

I'll have steroids for 4 weeks and I'll also have to take antibiotics every other day to prevent any infection that steroids will make me susceptible to. But that's a small thing to do.

I can see recovery on the horizon coming closer, slowly, but it's coming.

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Post radiation day 45

It's been quite a week. The biopsy procedure went ok on Wednesday. I thought I would feel much worse than I did. I expected chest pain but didn't have any, I mean they did take out part of my lung. I was tired and coughed more but the pulmonologist said that would be normal. Now I'm just waiting on results.

The anesthesiologist was telling me what he was going to use during the procedure, he mentioned Propofol...I asked him not to give me the Michael Jackson dose...he just gave me a wry smile at that.

The Pulmonologist was very positive that this wasn't cancer. I'm interested to see what it turns out to be. I just needed to give my lungs a couple days to recuperate. No restrictions, just what I can tolerate, inside or outside. I got some basic test results back already, and the CT during the biopsy showed my left lung is now clear -- woohoo Left Lung!

I feel like I've made some progress in recovery. I sat outside for a couple hours on the 4th of July, the weather was pretty nice, and it felt good to get fresh air. On Friday I went and sat in my garden, literally butt on the ground, and pulled weeds. Standing or kneeling would have been too much but I could certainly sit and be productive.

It had rained so the weeds were easy to pull out. I had mom and dad's help too and we got 1/2 the garden done. Saturday I did the same thing and the other 1/2 got finished and my garden looks respectable again. It's amazing how arugula can hide in the weeds, but it was there! And now it is breathing easy and is out in the sun again. One tomato, 6 jalepenos, and 1 banana pepper were also harvested :)

I can now make it up my stairs without having to pause on every 2nd/3rd step. And I no longer cough when I make it to the top. My appetite is still lagging behind, and I do get tired still, so naps are still in my repertoire.

My meditations are helping my anxiety to ease and with each step in recovery I am feeling more positive every day. I realized that even if this is cancer in my lungs (which I doubt because I'm recovering and with lung cancer I would not be getting better on my own), but even if it is, so what. I'll beat that too.

My hair is also recovering. It's growing, not as fast as I would like but it is. I can now make some pretty funny styles when I get out of the shower -- Flock of Seagulls, Mohawk, Recently Electrocuted, etc. Merin is calling me "Lloyd Christmas" -- Jim Carrey's character in Dumb and Dumber. I do have to laugh at that because I can seriously rock that hairdo. It might show up as this year's christmas card.