This is a very long overdue blog post with good reasons. I wanted to really tell the story of what has been happening so people understand why I have been on a digital radio silence for so long. I would encourage you to read the full version of this post but am going to start with the short version for those people who just want to catch up. But to truly understand the progression, skip the brief and go to the full version.
Since I started my new treatments I had been putting on a lot of water weight gain that was not going away. I was also feeling more and more fatigued and having shortness of breath. On Feb 20 my work had a round of layoffs at which point I lost my job. As I was negotiating my severance package my symptoms were getting worse to the point when I could not get enough air in my lungs to even formulate a single sentence. On Feb 25th I went to the doctor, then to the ER, then was admitted to the hospital.
All of my blood counts were very low and my white blood counts were so low that I became neutorpenic. That plus spiking a fever in the ER is what made it so I had to stay in the hospital until all my blood counts got back to a level where I was healthy enough to go home. While I was in the hosptial they also did additional ultrasounds and a CAT scan on liver to see if the chemo treatment I was on was being effective at all which it was not. The fluid backup was directly related to a bile duct now being blocked by the cancer and needed to be drained. But since I was highly prone to infection they could not do that until after my counts got back to normal.
During this whole time I was on a radio/e-mail/text message blackout. I did have physical visitors but even had to cut that off towards the end of my stay because it was too tiring. I was release on March 4th with all my counts very slowly getting better. I was still feeling very weak and walking was very difficult. When I got home I stayed off all technology and we cut off physical visitors for the next week with a focus on resting and healing. The only updates going to my family and former co-workers who have all been very supportive.The severance issues settled as well as continuation of health coverage for a while while I look over options.
This Friday (March 14) they finally did the procedure to get the fluids off my stomach which was causing a lot of my breathing issues as well as a fluid backup into very swollen legs and feet. They took off 3.5 Liters or about 7 pounds of fluid which has made a huge difference. I then started a new chemo treatment in the hope this might at least reduce the tumors in my bile ducts and get those system working again. Realistically tho my doctor has said that this treatment is only effective in about 20% of cancer patients. But were are going to try anything that we can. I am also trying to get my financial house in order and see what my options are for long term disability so I can focus on my health, healing, and being with loved ones.
Long Version: (please read this one for all the details and I thank you for putting up with my rambling)
Here goes the long and bumpy ride. After my CAT scan at Christmas it was decided I would give my body a bit of a healing break and at the end of January start up a new treatment that was similar to what we started this journey on but with different side effects. I was able to use the time to get significant pushes forward at work and look at some other opportunities. We then started the new treatments which took hold very quickly. I started feeling some significant fatigue setting in on a weekly basis that just kept getting worse. About 3 days after my first treatment my hair started coming out in clumps so Elan helped my shave my head so I wouldn’t have to worry about that. The funny thing was several people had started to wearing winter hats in the office so so when I started doing that, no one asked me why.
As the treatments went on there were several things going on. The fatigue started getting REALLY bad where I would have to pretty much rest the entire time I got home just to get up enough energy to get ready in the morning and make it through the work day. I also started retaining fluid in my stomach as my legs and feet started slowly swelling. Along with this I started having a hard time breathing. It was very gradual but I went from just a slowing down in walking, to having to always catch my breath just sitting and trying to talk to someone. I was trying to manage this as best as I could while there was a lot of doom and gloom going around the office about hitting sales goals, the financial problems the company was in, and the initial lay off of our customer service staff in New Mexico that was supporting our water wise plants division. I was also pushing my PTO time to it’s max because it started taking more and more time to build up energy to get through the day and push projects forward.
On Feb 20th my work did another round of layoffs which included me. This round really had to do with getting rid of positions the bank saw as expensive and redundant. The focus really is on getting the company profitable after several years of losses and from a business standpoint make perfect sense to me. I also don’t feel like this decision was driven by my health issues as at the exit interview their was a brief discussion of doing contract work in the future if they can turn things around profitability wise. Honestly, at that meeting all I could think about was the relief of packing some stuff up, heading home, and going to sleep for another couple of hours in the hopes I could feel better. Which is pretty much what I did as I set aside my severance package and other details of being let go.
The next day was my normal chemo treatment which I want in for because I knew my health insurance would be good through the end of the month. It was the last one of this cycle and completing the cycles properly is usually key for the drugs to work properly. So when my blood work came back as borderline for treatment they did what they normally do which is reduce the dosage and give the treatment. I then heading home and let my former boss know I was going to take the weekend to rest and absorb the paperwork to reply by Monday.
The weekend came and went with me in bed most of the time, my breath shortening, my stress levels not coming down, and generally feeling like things were getting worse. On Monday I told my boss I would try to come in to tie up some loose ends with my transition as he tried to add some additional tasks to that list. This was something I told him we could discuss while I was in the office because I was not feeling well at all. On Tuesday Feb 25th Elan had noticed that my belly had seemed to have gotten bigger, I looked very pale, and I could not get in enough air ro even complete simple sentences. She called my doctor who saw me immediately. After seeing my belly, hearing a reduced lung capacity and seeing how swollen my legs and feet were they immediately sent me to the Emergency Room.
Once we got there they rushed me through triage and into a bed to put my IVs in. That ended up being messy as I threw up at one point which never happens. Elan was a trooper through it and stayed through it all. After they ran the blood work they isolated me from the patients to tell me what was going on. ALL of my blood counts were down to dangerous levels. The most critical being my red blood cells which is why I felt fatigue all the time. Not enough oxygen getting to where it was needed. The fluid in my stomach was also pushing up on my diaphram making to difficult to get a full breath in my lungs which is why I was having the movement and speaking issues. The biggest issue of all was that my white blood cell count was so low that I was deemed Neutropenic. This makes you HIGHLY suspectable to catching ANY viral disease or airborn illness like the flu or colds. The last place you want to be when you are neutropenic is a hospital where that runs rampant and is the reason why they isolated me.
The plan was to fill me with IV fluids, take some vitals to make sure this was the only thing going on, then send my home for permanent bed rest until my blood counts rose to acceptable levels. However, when they were taking my vitals I had spiked a 100.6 temp. Netropnic + Fever = stay in hospital. So after waiting for them to prepare a room for me on the caner floor I was finally moved up there after midnight. We kept wondering why it took so long until we got there. Being netropinic meant I had to be completely isolated from the other patients and anyone seeing me had to go on high precautions until they ruled out I did not have a cold, flu, or ceptsis. The last being key because it is highly contagious and the precautions were to protect them more than me. SO that was 24 hours of all my visitors in gowns, gloves, masks and hats.
They finally got the samples from me to test and rule those things out so life became this combo of figuring out why I was retaining fluids and just waiting for my blood levels to rise back to normal levels. The waiting I think was harder on everyone else than me because it’s a process that take whatever time it takes and that is different from person to person. So I couldn’t really say if/when I was getting out but that I was constantly monitored so if anything went wrong, I was in the only place that could deal with it anyways.
The stomach/bloating/fluid issue lead to multiple ultrasounds and eventually a new CAT Scan to see what the cancer was doing. They also took a sample of the fluid to test to make sure there was nothing infectious in there that may be causing my issues. The moment they took the 60CC sample out I could feel some of my breathing return and I was able to talk in at least slow sentences again. Walking became a little easier and I could sit up without feeling like I was constantly having to catch my breath. The fluid had nothing abnormal in it which was good.
The CAT Scan on the other hand showed that the previous treatment was also not working and my cancer had grown into a bile duct that connects my stomach to my liver. Since this was blocked the fluid that was supposed to go into my liver went into my stomach and eventfully down my legs and into my feet. However, the prcedure to do this has a very high rate of infection to it so they wanted to wait until my blood counts got up and did this as an outpatient surgery which I somewhat agreed with. Part of it was me thinking I was there so lets just do this thing while the other part was to trust the expertise of the doctors. They also wanted to try some other techniques to try and move the fluids naturally which did not work.
During this while time I had the most amazing outpouring of people and support anyone could ask for. My best friends stopped by daily just to sit and hang or to get my mind off of what was going on around me. When Kira and the grandparents got back from their cruise they came by so massively lift my spirits. All of my close co-workers stopped by at some point to just talk work issues, fallout, and my health and how everyone was worried. I tried to calm fears as best as I could but that is sometimes hard to do from a hospital bed. I also got calls from my Mom and Dad and most of the family. While I was in the hospital I put myself on media silence just to keep my stress levels down and have one less thing to worry about. The laptop was banned from the hospital so I wasn’t even tempted to do work or respond to e-mails. I think this is the first e-mail sabbatical I had taken in almost 15 years and it felt nice to finally stop for a while and catch my breath.
Towards the end the physically visitors were starting to get a bit much too so we put a stop to anyone coming to see me except Elan. I was still putting myself under some stress about transitional tasks at work to receive severance until I finally really got it through my head that my health really does have to come before all other things. On March 4th I was deemed healthy enough to go home but was put on strict orders to continue resting, do not work, no strenuous activity, and keep letting my body heal.
I continued with the media silence for that week and we kept the no visitors policy going because having visitors just was stressing me out a lot more than I wanted to admit. I love having people around whihc makes me feel better but I never realize how much it was taking out of me just to have decent conversations even tho I was feeling better than before.
On March 7th my doc checked the swelling and my blood levels. They were getting better to the point they could schedule to get the fluids off my stomach and we would tentatively start a new chemo treatment the following week because we still need to reduce the tumors in my bile duct and get fluids flowing properly through my body. The new treatment will bring new side effects that need to be handled and the continuation of come old ones (still going to have hair loss). They have also set up to have a visiting nurse to some to my house and check vitals a couple of times a week which Elan and I welcome. It gives us a chance to have a 3rd party take an independent view on how I am doing and see if we should be catching signs/symptoms earlier. They are also sending a social worker over so I can finally get legal docs like a live will written and hopefully to start us on the process of getting me qualified for Social Security Disability so I can continue to focus on healing and/or the time I have left without having to worry about financials too much.
Which bring us to this weekend. On Friday I went into the procedure to have fluids removed and they took 3.5 liters or roughly 7 pounds of fluids off my stomach. That is 1 and a half bottles of soda for you play at home That I have been carrying around for about a month now. I immediately felt my flexibility and ability to get in and out of chairs improve. After about am hour I could feel I was breathing better, talking more normally, and walking did not tire me out as much. I was able to take a decent walk for 20 minutes before I had to sit down and grab my breath. I also felt I had enough energy for a short visit to the office to drop off my severance documentation and pick up some of the items I had left behind.
Then it was off to chemo to try this new mixture and hopefully get some forward progress. My doctor, who is a very straight shooter, told me before we started that the success rate for this combo of drugs is about 20%. However I really don’t have many options to go to at this point so I will get what I can take. Even after all that I felt like I had the energy to go to the movies and get dinner out afterward which has not been the case for month. It finally made me feel more normal than I have in a long time which was very nice.
Through all of this Elan has been there to help me along the way. From noticing the first changes and getting me to the doc/ER/hospital. To spending many a sleepless night in my hospital room. To helping me pull the reins back on visitors and stress in my life. To helping me focus on getting rested and healthy. To doing all the cooking, cleaning, and god damn snow plowing that has had to happen around the house. To driving me to all my appoints seeing how I can not. To even just snuggling as best as we can on the couch and letting me know things are going to be fine. You have no idea how grateful I am for all of this and so much more.
Unfortunately, the road ahead will get bumpy again at some point and hopefully it will not be as bad as it was this time around. There is still hope out there. I am home writing the huge update and feeling a little more “normal”. But my sense of normal will be rapidly changing and more focused on getting and staying healthy in all aspects of life. The hope is these incidents is just the big ‘reset’ button for me and not something else. Only way to find out is to try and keep living your life the best you can surrounded by the people you love.
This entry was posted on Saturday, March 15th, 2014 at 10:43 pm and is filed under the categories of Personal. The entry has the Tags of cancer, cat scan, featured, health, hospital, ultrasound You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.