This is going to be a long post for a very long day, I hope the humor that I have tried to inject in this post will get you through it. For your efforts here's a photo of us at the MN Zoo. Patti wanted to get some family photos for Christmas and before her hair was gone and everyone was calling her Cue Ball, Bowling ball, domehead, Mr. Clea-what was that hunny? Oh...okay I'll stop...
Photo courtesy of Tara Berg and TGB Photography
Tuesday was the day after Patti's port was put in, it was the day where we would get results and move on to the next stage, or so we thought....dun dun dunnnnnnnn...
The day started off early, we both had to get up and get Aiden to school before we did anything else. Next up Patti had a rookie symposium or as most people say: "orientation" with the big wigs of her company 'Be the Match.' Unfortunately for her poor husband, she couldn't drive yet because she was on the 24 hour restriction after surgery. We dropped Aiden off and went up North Minneapolis (after a short hiccup), and let me tell you traffic was AWWWEESOMMMEEE. As we dropped off Aiden at school that Patti discovered she forgot her work badge at home. Digging through her purse and searching her bags she couldn't find it anywhere so we had to head home. Freaking out she raced back outside and...promptly found it in her purse. Ladies, your purses are unforgivable and merciless black holes, I don't envy you.
Oh lordy, we're running late so said Patti, yet ahhem some thanks are in order due to a little bit of speeding and reckless driving, we showed up 2 minutes before the orientation started. So what does a husband with 4 hours to burn?
1. Go to holiday and go potty
2. Buy a bag of chips, 2 sausage mcmuffins, 1 energy drink and 2 gatorades
3. Turn on Thor on netflix
4. Pause Thor halfway through and 1 gatorade and energy drink later, drive back to holiday and use the potty
5. Buy water and drive back to Patti's work and continue watching Thor
6. Finish Thor, drive back to holiday after 1 gatorade and 1 water later and use the potty
7. Buy beef jerky and another energy drink
8. Start watching The Avengers
9. Pause halfway through 1 energy drink later and go to holiday and use the potty
10. Patti calls and says she's ready.
I may have drank too much liquid.
Next was the doctor's appointment at the U and we made it down in just 15 minutes so that was pretty darn great. In the lobby of the Masonic Cancer Center we cracked jokes with the nurses and made life interesting for everyone. Patti is a very up person and her smile hasn't dimmed once while we've been downtown this past week and everyone says they appreciate her demeanor where other people could be crabby, depressed and aggravating she's pleasant, hyper and happy.
I just want to stop here and give a shout out Maureen who is the Cancer Care Coordinator Nurse who is a very busy person who says multiple patients and doctors throughout the day and sometimes seemingly at once but who always makes us think we're the only patient in the world and she's here just for us. It's people like this who make ill patients feel better and make their situations more tolerable.
I am going to skip the results in this blog posts due to having to tell more family members at this point but I can tell you about a lot of things. First was that Patti got a phone call earlier in the day that they wanted Patti at the same building as her Pulmonary tests for a last minute appointment. When we met with Dr. Barachova who is her main doctor throughout this whole process she informed us that they were still not 100% sure that it was Hodgkins. They were 99.9% it was but with cancer apparently you don't mess around even with that .1%. That next meeting of the day was meeting with the surgeon, Dr. Hamler, who wanted to meet and discuss what they were going to do.
Along with the 2 o'clock meeting they also wanted to schedule an EKG which is part of the new Chemo drug testing regimen and they wanted blood samples as well. So yay more and more tests for us when all we wanted to do was let the knowledge of the results sink in. By this time we were late for the 2 pm appointment and raced over to the other building, met Dr. Hamler, discussed everything, and his assistant scheduled even more blood tests. We then raced back to the clinic and got double the blood drawn and met with the doctors and nurse again.
On the way back from the visit with Dr. Hamler I was a little more than nervous about getting back in the elevator and heading down. I don't like fast rights and it was a fast elevator. So I took the stairs down from the 8th floor. Unfortunately they only go to the third floor so I got onto an elevator that said down. Again, unfortunately, the people that joined me didn't see the down arrow and pressed the button for the 14th floor so I got to go UP again. When we got to floor 5 we stopped for a passenger and we headed down to the second floor. So now I'm stuck on the elevator with people who want to go up, while I want to go down and if I had been paying attention I would have noticed that floor 2 was the floor I actually wanted to get off on to be in the tunnel system but I thought I had to go to the basement. Five minutes into exploring the creepy basement I came to the conclusion I was on the wrong floor and another couple minutes and decrypting the map on the third floor had me back in the tunnel system on floor 2.
Now we're hunky dory right? Wrong, We took the wrong tunnel and ended up in the hospital instead of back into the clinic. We're new at this, our bad...
I'm being very vague about the results and its for a reason, it deserves it's own post, in this one I just want to explain our long day. The first weeks of cancer treatment involve a lot of tests. They are exhausting, hectic and stressful. The people involved: doctors, nurses, assistants, etc. at the U of M and more than likely most other places are very professional, empathetic, and want to see you through it as quickly and efficiently as possible. We've been very lucky from the start where it can take some weeks to get an appointment with an Oncologist (Dr. Barachova is ours), we got in immediately, within days. Then we got our schedule for the next week and a half and it called for many early mornings and definitely long days. New tests have sprung up almost daily to help everyone better give a better prognosis of what is specifically afflicting Patti. Now with getting into the experimental chemo treatment program even more tests are needed so not only the hospital can get samples, test results, etc. but also the sponsors of the new treatment.
We do have our first date for chemo, along with that will come a pretty much organized and regular schedule for the next few months, that we don't have quite yet. Again explaining chemo, our results and how this will affect us will come with its own and equally long post, but that will be after more people are told.
I completely went off on a tangent there but at this point I figured most people were like: Where da heck are the results, how is she, yada yada yada, even though I already said I wasn't going to explain them. I stopped, explained the reasoning, lets move on.
So we got back to the Doc's and now we're actually going over each drug of chemo, our nurse Maureen is the one explaining each drug and its effects. It's nothing that gets us too excited nor does it make us feel any better but they have to be explained and very thoroughly if we are going to be prepared for the worst and hoping for the best. It's getting close to 4:30 pm by the time both doctors (I'll talk about Deb, the second doctor, in the chemo post) basically say it's too late for the EKG we'll do it tomorrow before the Lymph node surgery.
I think the best part of my whole entire day there was the fact I had parked on the top level of the parking garage (more out of necessity over want), and got to see this at sunset:
What a beautiful stadium at a very pretty time of day. If there wasn't a crane in the way it would be perfect. I know Patti didn't get a whole lot out of a stadium where players score 'hoops' (inside joke) but just the view all around from that vantage point relaxes the soul.
I won't get into the crazy drive to Patti's parent's house or how bad the neighborhoods we went through were but we arrived at their house weary, bleary eyed but happy to see our boy. Her parents have just been incredible throughout this first few weeks and I know tons of people; family and friends, have offered to help (Thank you Donny and Suzie for watching Aiden!!!) with things that we may need, but I do believe for the most part you are going to fight these two wonderful people off. Although, at some point some sort of Battle Royale might just be what Patti needs to feel better so keep your calendars free.
Next up I will talk about the Lymph node surgery, then even though it's out of order of events, I will talk about Patti's results and what the heck chemo is.
Thank you!
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