Roller coaster? Oh, absolutely! Ups and downs? Yes, and yes. But then there is the part of this roller coaster ride that you not only feel the ups and downs, it's where the bar locking you in is released, and you are holding on for dear life, not so much worrying about the ups and downs, but hoping, and praying, you can just stay in the seat.
Right now, we are in the seat.
There were times this week, however, that this didn't seem to be the case.
Back up a few days and let me share with you just a sliver of what this week was like with our sweet Tiffany.
Sunday 8/10/14 - Tiffany was doing mostly alright. Her body has started becoming a little more frail, and if you haven't seen her in a while, it might be alarming. She continues to lose weight, no matter what it seems like we are trying to do about it. It's amazing how things work this way - I can't tell you how hard it is to lose weight when you want to - but when you are trying to keep it on - it sometimes seems just as difficult. Well, we have been childless for almost a month now and Tiffany and I decided it was time to call the kids home. And they were happy to oblige. As much as you love extended family and love being with them - eventually it is nice to come home to your own home, your own bed, and be with your immediate family (having been home a week now - I think they are all ready to leave again, however).
Tiffany had been sharing with me about some issues popping up, one of which she was feeling coming on for a few days prior to Sunday. She had started to feel like every time she was sitting or standing up, she would be a little more out of breath and would feel like her ears would plug up. She described it like she was under water. Her energy seemed to be wearing out.
Monday 8/11/14 -Tiffany had an appointment back at Huntsman in the radiation department in order to be mapped. They go through and set her up and make sure they know how to position her to ensure they get the radiation coverage on her and know how to position her. Also, there were some labs that was needed - always more labs - though these were research labs. The Friday before Tiffany had agreed to and signed off on her blood being entered into research prior to the transplant. We are hoping that doing so pays off for somebody down the road. Once the labs came back, it showed that her platelets were down again, which wasn't really a surprise, and they gave her a platelet transfusion at the end of the day.
During the day, it was decided by the transplant team that one of her drugs she was taking orally (one that wards of fungal infections - a big concern when you don't have an immune system) would have an adverse impact to the transplant and so decided they needed to change it, however, the new drug could only be administered intravenously. And since it had to be done every day, a home nurse was called in to teach me how to give it to her at home each night.
The nurse was only paid for by insurance for the one night, but it didn't seem like a big deal at the time, to me. I have seen the nurses at Huntsman access her port so many times over the last 6 months that for me to learn how to do it wasn't a big deal. Now, you see - when somebody you know is working on tubes
that go directly into your blood stream, there is a little bit of
trepidation as they proceed. I get it. My older brother is a pilot, and for some reason, getting in the plane he is flying is shear fear. Anybody else, and it wouldn't be so bad, but for some reason, the people we know, the people we love, are sometimes the last person we want to hold our lives in their hands. As Tiffany said about me, "he has burned our dinner on more than one occasion'!
Well Tuesday evening came and time for the infusion was upon us. Things started out well, she even congratulated me on starting it well. Then, as time went on - bubbles started to appear in the tubing. Air in the blood stream is bad - that is what we have learned. What we didn't know that night - was that it takes a lot of air in the blood stream to be bad. In any case, we started to work to get the bubbles out of the tubing. It took a while. And each second longer it took to get the bubbles out, the more our Tiffany got worried. We eventually got them, but not without some worry and doubt if I could do the job. It was the next day, in talking to nurses and doctors that put both of us at ease about the amount of air it would take to do any damage. This was a big hill in the roller coaster.
Wednesday 8/13/14 - Tiffany woke up and was having a hard time breathing, again, when she sat up or stood up. Laying down she was fine. The issue on hand this morning was that she had a dentist appointment. Yes, dentist. Prior to the transplant, she needed to get the sign off from the dentist that there wasn't going to be some issue that would pop up during transplant that would cause concern - like a cavity or a cavity that would abscess. When this happens to your or I, it might be a bit painful, but not life threatening. When this happens to an immuno-suppressed patient - which Tiffany will be, it becomes a threat to her life. So we had an appointment set up to get the sign off from the dentist. Tiffany had to lay down in the car on the way to the dentist, and then I would go in to check her in prior to getting her out of the car, and move her to the dentist chair to lay down. Going into this appointment, we knew there was an issue with a wisdom tooth. Six months ago we did this same thing as a workup to get the transplant approved. At that time, Tiffany's wisdom tooth had a small cavity in it, and though not a big issue at the time, the dentist and Tiffany had decided to extract it, but would have to find an open window between treatments. Well - there has been no window. Sure enough, the dentist checked it out and the cavity was close to the nerve and needed it to be dealt with prior to transplant. The dentist had two plans, and shared them with the transplant team. Either extract it - or do a root canal. The first would take care of it completely, but with Tiffany's platelet issues - we would need to go to an oral surgeon as they would be able to handle that issue a lot better. A root canal would be less invasive and platelets wouldn't be as big of a concern, but the tooth would remain and wisdom teeth, I guess, are not the best candidates for root canals (going off of what the dentist had said, anyways).
We left the dentist, still waiting on the decision from the cancer team what they wanted us to do. But on the way home, again with Tiffany having to lay down without feeling out of breath, she had had it. The breathing problems and feeling of being under water had emotionally gotten to her. Physically, she was feeling weaker each day. The tooth seemed to be the straw that broke her back.
She was done. And admittedly - I could understand it. From my viewpoint - she has tried hard each day to work towards this transplant, but each day it just seemed like things got harder and harder, weaker and weaker. I stopped on the side of the road, all the while the roller coaster of life was plunging hard, and it seamed like we were no longer tied in, but holding with our might to hang on. It almost seemed like our grip was loosening. In the middle of this drive home, tears streaming down our faces, we had decided to go home, talk to the kids, call the doctor, and be ready for what may come next.
Having a tearful, yet wonderful conversation with the kids, I got on my knees with them and prayed for Tiffany. We have done this soo many times over the years, but there was, again, a sense of urgency and desire from all four kids, from the oldest to the 6 year old. One by one - they went to talk to mom. There she expressed her love, admiration, and hope. She never really told them she was done, but it no uncertain terms that things seemed pretty dicey.
And then off to Huntsman we went once again. Getting labs, her platelet count had dropped again, which was unexpected. Her hemoglobin hadn't done much, it had dropped about .4 since Monday - and although low for you and me, she was at a high enough place not to warrant a blood transfusion. Her hemoglobin had been slowly dropping for a few weeks now, it had almost been just over two weeks since her last red blood transfusion and though it was slowly dropping - it seemed as though that was fine. All her other counts seemed fine as well. With her breathing problems, they did a chest X-ray, took her vitals. Blood pressure and oxygen levels were fine. Her lungs from the X-ray was just fine.
On paper - she was just fine.
But physically - she was not. At one point in the conversation, she told Dr. Glenn, in what seemed in no uncertain terms, that she did not feel like she could do the transplant. That even with everything on paper looking fine - she was not.
Tiffany has been a mystery since the beginning. The doctor checked out her ears, throat, lungs, and everything else she could think of. At this stage in the game, the patient is just as in charge of this transplant as the doctors are. She does not have to go forward with it. She could pull the plug at anytime if she believes it is in her best interest. The transplant, clinically, is not a slam dunk. There are very good reasons to consider not doing it. Dr. Glenn was willing to listen to her, but in the end, we opted to do a couple of things. Rather than pull the plug entirely, it was decided to simply postpone it. Basically, if Tiffany was saying she needed to get stronger before she felt like she could do it - then we were going down two paths. If she continued to get weaker, we would no longer do the transplant. If she could get stronger - then it was back on the table.
After an already long and emotional draining day, we ended up leaving Huntsman around 6:00 pm. The emotions in that time were crazy. Tiffany and I had talked through many different scenarios. Suffice it to say - there was peace in our hearts that our Heavenly Father was in charge, and things would end up the way they should. The roller coaster was in a series of ups and downs all afternoon long. Having called her parents earlier in the day and letting them in on what was going on, she opted to call them and talk to them on the way home and update them what was going on.
It was in this discussion that surprised me. Emotionally, I was geared up to go down the path that she had decided. Her parents, on the other hand, were not. When she had talked to them - in essence they told her to hang on (and rightly so). Before we were home, the decisions we made in the hospital were completely turned upside down. Before long, she made the decision that this was her only chance.... that she had to move forward with this transplant! I whole heatedly agreed - but the emotions that were being played with seemed to fling me out of the seat of the roller coaster, but this time, there was energy to hang on and move forward. The next couple of days were going to be wild. In fact, the next week was going to be more of the same. But we were more determined, more committed, than we had been before.
(End of Part 1 - Part 2 to come shortly)