Where do I even start??

It has been about 6 weeks since my last blog and to say it has been eventful is probably an understatement! I apologize in advance for the length of this post!! Feel free to skim through the boring parts...

As I mentioned in my last blog, I did get the drain placed in my right lung so that I would be able to drain my lung while on my trip. I also started chemo on July 1st. The chemo was long but pretty uneventful. I was supposed to have chemo again on July 8th but when I went and had my bloodwork done my white count was below 2 which was too low to get my treatment. Of course, I was disappointed because I wanted to have 2 treatments on board before I went on vacation. Just to be safe they prescribed me a 7-day course of antibiotics so that I would have some extra protection while we waited for my white count to rebound. I didn't dwell on the disappointment for too long because Julie and Sonja arrived that afternoon for our relaxing pool days before our trip! We had a great weekend and Ramsey cooked up a storm for us. On Monday evening we boarded our flight for Barcelona and spent the next 14 days seeing the most beautiful places in the French and Italian Riviera. The Dr had said I could drain my lung every 3-4 days so that is what I did. I tried to time it to drain on the evenings before our most strenuous days. Doing this worked great and there were only a few times that I needed to take some extra breaks when we were walking. Steps and steep uphill were a bit tough, but we just took our time. We had an absolutely amazing time and considering how the last 4 weeks have gone since we got home, I am immensely grateful for how good I felt on that trip. I did lose 90% of my hair on the trip so we ended the trip by shaving my head our last night in Rome!!

After we got back from our trip my nephews (better known as The Littles) were here for a week. This has become our summer tradition, and we enjoyed having them here.

They loved the pool and we never even had to leave the house to be entertained. I hope they keep coming back every summer!

On the last day of the boys visit I had my 2nd treatment. It had been 3 weeks since my first one, so my white count had returned to normal and there were no issues with treatment. I would say that post this treatment I was having a hard time feeling good/normal. I was very tired, napping in the afternoons and going to bed at 9pm. I was back at work and trying to catch back up but just not feeling or operating at 100%.

I had a port put in on Tuesday July 30th, pretty simple procedure but I had to go all day without eating with the procedure being at 1pm and I really struggled to get back on track. That Friday I went in for chemo again and once again my white count was too low.....this is the first treatment protocol for me that has ever been on back-to-back weeks and my white count just didn't seem up for it. They decided to give me fluids while I was there since I live in a constant state of dehydration. When they went to access my new port, they discovered that it had flipped over....um what? The metal part was against my skin instead of the silicone part. They tried to flip it over with no luck so two iv pokes later we found a vein that worked, and I got my fluids.

After treatment I tried to drain my lung at home and got no fluid out. While on the surface this seems like a good thing it was also quite a shift. While in Europe I was getting 700-800ml every 3-4 days and the day I got home I got probably 700. Even though nothing came out I had an annoying, unproductive cough, was losing my breath at the end of sentences and still experiencing shortness of breath.

The following Monday the IR team, who I am on a first name basis with, called and scheduled me to come in on Tuesday to take a look at my port. I go in and as we suspected it had somehow turned over. Eventually Dr Chu, who did the original surgery and all of my lung procedures, was able to manipulate the port enough to flip it over. Not exactly fun but better than going back under anesthesia to flip it. I think it is going to continue to be tricky because just a few days ago it looked like it was on its side...I was able to get it to lay down and I am hoping that I got it to lay down in the right direction!

Since I wasn't happy with my breathing, I asked my oncologist if we could do a chest x-ray. I knew I was going in to have the port looked at, so it made sense to just get a chest x-ray while I was there. The chest x-ray showed that there was indeed fluid in the right lung even though nothing would come out of the drain. My oncologist put in urgent orders for the IR team to see what was going on with my drain. I didn't hear from the IR team on Wednesday, despite calling and leaving a message 3 times. I still hadn't heard anything on Thursday morning and I really wanted to get this resolved before the weekend because the kids and I were going to the Luke Combs concert in Houston and I wanted to be able to walk to my seat without losing my breath. I finally called the main hospital number, and they connected me with the Cath lab who then told me the scheduler for the IR team was out until Friday. I said -- is there not a back up? He said...the scheduler is out until Friday. Not super helpful! At this point I knew that if they weren't even going to call me until Friday that I probably wasn't going to be seen before the weekend. So, I decided to press the issue and go to the ER. Once at the ER I explained to them that my breathing was not good, and my drain didn't seem to be working. The ER doc got in touch with Dr Chu but since it was late in the day..4pm there wasn't really anything that could be done that day so they thought they may admit me to ensure that it could be addressed first thing in the morning. I said -- is there a way for it to be addressed first thing in the morning without me being admitted and the ER Dr said... you would think so but not really. I said fine - admit me -- fix me in the morning, I have chemo at 12:45 so get it done before that and all is well. The ER doc said - let me make a few calls and see if there is a way we can let you go home and still get this done tomorrow. Next thing I know the IR scheduler/nurse is calling me from her home...now remember I have spent way too much time with this team, so we are on a fist name basis. She said - come in at 11:30 tomorrow, if we can't get the drain to work, we will do the needle in your back to get it out and still get you to chemo on time. Great - didn't have to spend the night in the hospital and issue will hopefully be resolved Friday morning.

I wake up optimistic on Friday. The scheduler/nurse calls me again and says come in at 10 instead of 11:30 we may give you some meds in your lungs to help it drain. No problem, I get there at 10...it takes an hour to get the meds ready and then the meds have to sit in my lung for at least 30 minutes....as time goes by, we see that we are cutting it close for me to get to chemo. So, we revert to a thoracentesis which is where they put a needle in my back and drain the fluid that way. Fine by me, let's do it. Go to the procedure room, they do an ultrasound of the lung to see where to place the needle and guess what -- the fluid is too thick to drain. This is why my drain won't work and doing a thoracentesis won't work either. So new plan. Go to chemo, meds will be ready to break up the fluid when I get back here at 4pm we will inject that, wait 30 minutes and then drain through my normal drain. Ramsey and I grab a quick lunch and then he drops me at chemo(no visitors allowed at chemo). Chemo goes fine, they are able to access my port without any issues. They also hook up a white count booster shot that will auto inject Saturday night and hopefully improve my whitecount! They know I need to get back to the hospital, so they observe me after chemo for 15 minutes instead of 30 and then off I go to the hospital. Once there they inject a combination of TPA and another med into my right lung. The TPA will thin out the fluid which has become thick from blood. We inject the fluid, wait 30 minute and then start the drain. It is draining slower than normal, but it is draining. After about 45 minutes we have drained 600ml. I head home and am able to drain another 400ml Saturday morning before we head to Houston.

Why is there so much blood in the fluid...we don't know yet. The kids and I have a great time at the concert. Despite getting 1000ml out I do get a bit short of breath at the concert -- a sign that maybe all is not right in the lungs, but I don't give to too much thought.

So, after a fun weekend I am back at work and just doing normal things. I am still having some shortness of breath and a cough. My talking is better on Monday but by Wednesday I am back to having trouble finishing sentences. I reach out to my oncologist on Thursday morning, they reach out to a thoracic surgeon that I saw last year who can do a procedure to remove pockets of fluid in the lungs. The fluid issues resolved last year so we never had to do the procedure but now it is time to consider it again. The surgeon advises me to go back to the ER and have the TPA treatment again and then I will get an appointment with him. So, I head off to the ER, I get there tell them in pretty good detail what needs to happen, and they start making phone calls to the IR team etc to come up with a plan. We do blood work, a chest xray, and ultrasound. Dr Chu is out of the office this week so the pulmonologist gives the go ahead to do the TPA. The IR scheduler, who is also a nurse, sees my name on the ER list and comes over to see why -- she then helps the ER doc administer the TPA since she was the one who did it the last time. So, I got to the ER at 11:30 and the TPA was injected at 4:13. The pulmonologist had the ER doc do a few things different -- one the TPA was not mixed with the other drug we used last time and two he wanted the meds to sit in my lungs for 2 hours. In general, I feel like I have been well taken care of anytime I have been at this hospital but this time I felt like they basically ignored me for the 2 hours that we had to wait. About 45 minutes in I started to feel terrible. I could hear crackling in my lungs, I started coughing, finally coughed so hard I threw up a bunch of phlem and saline. My nurse happened to walk by as this happend, and he said he would tell the Dr but didn't, or did and the Dr didn't do anything. I felt better for about 30 minutes and then the crackling and coughing happened again. I threw up phlem and saline again. I called the nurse and told him I was freezing; he gave me a blanket and that was it. I then watched the clock outside my room slowly move...at 6:13 on the dot I hit the call light to tell them it had been 2 hours and could we please drain. It took 15 minutes from them to come start the drain. When the Dr came in, he asked how I felt, and I said terrible. Turned out I had a fever of 102 and my heart rate was 160 and my oxygen wouldn't go above 85. They did not ignore me anymore. I had texted Ramsey that I didn't think I could drive myself home, so he and Helton were already on the way. I then texted that I had a fever and high heart rate and Ramsey called Abbey and she and a friend headed my way too. They gave me zofran and tylenol and started an antibiotic. With the fever and the high heart rate they were worried about sepsis. They also finally gave me fluids, the nurse said he had been asking for hours to give me fluids, I don't know why they didn't but thankfully we finally started them which began to help my heart rate pretty quickly.

By the time Ramsey and Helton got there the ER doc, with guidance from the pulmonologist had decided they would admit me to the ICU for the night to monitor for infection. Just hearing ICU was scary, I have never been in the ICU. The ER Dr said better to start there and get downgraded then start somewhere else and have to get upgraded. So we waited in the ER until a bed in ICU opened up. By then Abbey had arrived and we all went up to ICU. The family had to stay in the waiting room while they got me settled but then they were able to come in. I got the best room in the ICU, large, great views, but honestly, I just wanted to go to sleep. We went over everything that had happened with the nurse practitioner that was on duty that night, trying to explain what was different that day then the last time we did the TPA. By now my fever and heart rate were coming down and the NP didn't think I needed to be in ICU but better safe than sorry. The plan was to monitor my fever, heart rate, oxygen and blood work through the night and re-evaluate in the morning. The family all headed home, and I slept off and on through the night. About once an hour I felt like I moved in some way that would set off an alarm of some sort but my vitals stayed good. The only issue I continued to have was shortness of breath when I would get up to use the bathroom.

The next morning the Dr came through and said that they think the fever was due to bleeding caused by the TPA. They were feeling good that I didn't have any infection but wanted to keep me on antibiotics and downgrade me to a normal floor and keep me one more night. I didn't want to stay another night. but I also didn't want to go home, get worse and start over. Ramsey stayed until I got settled into my new room. Thankfully he brought me some toiletries, a phone charger, some clean underwear -- you know the essentials! In my new room I continued to be on 2 litres of oxygen, was getting antibiotics, some meds to prevent stomach issues, a shot to prevent blood clots, regular bloodwork and regular vital checks. Saturday morning the Dr came and in and said that I continued to show no sign of infection. They were going to do a walk study to see if I needed to go home on oxygen and then would let me go home. Well...nothing happens quick.. we did the walk study at noon. We started walking with no oxygen and my oxygen levels quickly dropped into the 70s. We added oxygen and when walking I needed 6 liters of oxygen to maintain a good level, when I wasn't walking, I needed 2 liters. Now I have never needed oxygen before and in theory the fluid is out of my lung but what seems to be the issue now is pockets of fluid in my lungs that have walled themsleves off so the drain can't do anything. This is why I need to see the thoracic surgeon to see how we can get more of this pocketed fluid out of my lungs. It took another 3 hours for the portable oxygen tanks to be delivered, we decided to have the large one delivered to the house. I was finally able to come home!!! When we got home the delivery guy was there with the big oxygen machine I will use at home. We got a lesson, hooked it up and I was finally settled at home.

Today, I feel better. I got a shower, a good night's sleep and am getting used to the oxygen. I would say that Thursday was the most scared I have been since I had my original chest biopsy in 2016. I was scared because I didn't know what was happening, my body has done so well over the years -- tolerating meds, adapting when it needs to, rebounding, and on Thursday I felt like it just gave out. We were all scared, we were all trying to be strong but telling each other its ok to not be strong. In that two hours of waiting on Thursday I just wanted to cry but I seem to have lost the ability to cry -- I don't know if I am too numb, too jaded, my antidepressant does is too high, but I really don't cry anymore. I may have to watch Terms of Endearment or Beaches this week because I normally cry at those movies, but the subject matter might be a little close to home.

I am desperate to find a new normal, that has always been what keeps us sane. The last 3 weeks have been anything but normal and it has taken a toll on everyone. We are using humor to cope - Helton called me Grandma T when I was hooked up to oxygen at home. This is my grandmother that lived to 104! We are still making our normal plans, not cancelling anything. Wondering if we can get better tickets to the CSU vs Texas game if I go in a wheelchair. We have serious moments too. Ramsey and I finally sat down and got our will, advanced directives and medical power of attorneys done, witnessed and notarized. On the way to Houston, Abbey asked me if I was scared...I told her I am scared to go to MD Anderson because I feel like they won't pull any punches. Ramsey told me I don't have to be strong all the time.

I am so thankful for my family. Ramsey and Helton are figuring out where all the random dishes go when they empty the dishwasher. Ramsey is working on his laundry skills, but I think when I was in Europe, he dried the same load of laundry 5 or 6 times. Ramsey has been going to the store the last few days - he needs to work on his bargain shopping and impulse buys, but we will give me a pass on that. Abbey is the best patient advocate I could ask for. She asks hard questions, she takes good notes, she doesn't let me downplay anything. It is a blessing that I work with one of my best friends who can step in at a moment's notice and make sure nothing gets dropped at work even when she is so scared with what is going on. All of my friends and family are checking in all the time, checking on my physical and mental health, making sure all of us have someone to talk to if we need it.

If you have made it through this whole blog, thank you. It was a lot, but I needed to get it all out of my head, otherwise it swirls around in there at night. My hope this week is to feel good on the oxygen, get an appointment with the surgeon, have a normal chemo treatment and enjoy a visit from my Dad and Sherry at the end of the week! I also hope that my next blog is shorter and much less eventful. Thank you ALL for all of your continued support.