The journey

The journey was long, although, while traveling the first part, there was so much coming at us, the only way to stay semi sane was to roll with the punches....... and there were a lot of those. I'm going to tell you about the whole thing, I'm pretty sure I can't pull it off in one sitting, so you may have to come back a couple of times for the full story.

As indicated, before getting sick enough to stay home from work, there were signs there was something not completely "right" in my world. In November, I had a physical, without any flags, but beginning of December I had a lump on my collarbone that was not there one day, and about the size of an egg the next, so a biopsie was in order...... The result that  were given was: "We don't know what it is, but it's not cancer". That in itself put a good amount of fear in me, but what can you do..... I asked how they could say it wasn't cancer, if they couldn't say wat it was, and was told that "I should be happy with the "no cancer" verdict and not worry about it. The lump was taken out, nothing was left behind, so basically get on with my life and stop trying to "have something" that wasn't there."

I wasn't really at ease, but I couldn't MAKE them give an answer I could live with, now could I? The part of me that was happy with "no cancer" overruled the "WTeverlovin'F" part, so I got on with life. I had just started a new job, and for some reason, I could not get my head around what I was supposed to know. It was like I couldn't retain all the new stuff that was coming at me and I constantly felt overwhelmed and out of my depth. This was a new experience for me. I'm usually pretty good at knowing what I know, and quick to pick things up but I reluctantly chalked it up to being tired of starting over and being distracted. People started to complement me on losing weight, something I wasn't really shooting for, but since I wasn't eating right because the weirdest things would make my stomach roll, and sleeping worse, I took it at face value. In February, I started getting winded walking up the stairs to the workfloor, and a week or so later, I started getting winded walking from the car to the building, and having to stop halfway up the stairs, because I couldn't catch my breath..... March 23rd was the first day I couldn't get out of bed. I had been puking more than normal resulting in not having kept anything down for 4 days, having a bear of a headache, and just plain being miserable. After 2 days of not feeling any better, I figured I better go see a doctor because this didn't feel like the flue anymore.

I was weighed and it turned out I had lost about 10 pounds since my check up in November, BP was good, temperature was a little on the high side, heartrate normal, nothing funky that they could tell, blood was taken for testing and an appointment was made for 5 days later.

Next visit, I had lost 2 pounds, bloodpressure was a little low and the bloodtest came back with a lowgrade infection, so I got anti-biotics..... and within 24 hours, I was scratching my skin raw for no apparent reason and was given the advice to put some calamine lotion on the spot the itched the most, and to try and get some rest, and my follow up appointment was made for next Monday.

I am normally an avid reader, and knowing I would spend some time in bed, we managed to get to the library and pick up some books. Set up in bed with the laptop, bottles of water (at that point the only thing I kept down, a box of crackers and the books, I settled in while Mike went to work. Most days he would come home during lunch and make sure everything was still "good". Doctors visit on Monday netted me another battery of bloodtests because now they were thinking I had Catscratch Fever (The doctor had discovered we had a cat) I had lost another 2 pounds. Blood came back clean, and an ultrasound was scheduled for 2 weeks later, with "checks" at the doctors office twice a week. I kept losing weight, and by the time the ultrasound appointment came about, I was heavily leaning on Mike to get where I needed to go. Eating was at a standstill but I was always thirsty, although I rarely visited the restroom. Bloodpressure kept going down, blood still showed infection but none of the test came back with that dreaded but anticipated answer as to what was wrong with me. This went on until the beginning of July. Twice a week doctor, always losing weight but no answers forthcoming. Finally the doctor set me up with an appointment with a physician specializing in Infectious Diseases. I thought he had totally lost his mind and almost didn't go to the appointment. Our family deductible was 8000$ and we only had one income and I already had no idea how to pay the bills that were starting to come in. Mike took me anyway, siting health over financing was the way to go. I am so happy he did that. She ordered a colonoscopy for end of July. (I think, at that point, that was the only test that hadn't been done).  Mike stayed with me for part of the night before the test, and was back by 7. Around midnight, I had gotten a bodyscan as a precaution. Why, we weren't told, and we assumed it was standard operating procedure.  The next morning, while we were waiting on a timeframe so Mike could get some sleep, the doctor came and told me the colonoscopy was off the table. Because the bodyscan had shows my whole body to be riddled with "spots" they were going to do a biopsy immediately (and they weren't kidding) on my vocalcords, and because it was so close to my carothic, it would be done by a heart surgeon, and she was on her way.  I was so upset. Not because of the surgery, but because of the scar it would leave. I already had a nice jagged scar from the biopsy in Deember right above my collarbone, and this would make me look like Herman Munster, the only thing missing would be the bolts.... (The things that go thru your head when you're all muddled...... unbelievable. LOL!)  As soon as the doctor was done talking, they put something in my IV, and the next thing I knew, I was waking up in the ICU because my bloodpressure was so low, they weren't taking any chances and I had to stay at least over night, possibly longer. I didn't think anything of it at the time, but in hindsight, I was hell on the nurses that night. I was not sleepign well, hadn't for a long time, so I would doze for half hour or so and upon waking think it was morning......so I would ask them when Mike was going to be able to visit, and why he couldn't be there...... Obviously, anesthesia makes me needy..... The next morning I was released, as my bloodpressure was ok, the anesthesia had wore off, and I was breathing without a problem. The surgery had gone well, they had scraped my vocalcord, so I would probably be hoarse for a couple of days, but they had to give me 2 bags of blood. I was to sit up for a couple of days or at least not lay flat and as soon as the results were in, they would contact us. Until than, the suggestion was to heal up, try to eat and basically "sit tight"......

The visits in June and July to the doctors office were done with me in a wheelchair, because I couldn't stand. If I had to use the restroom, or take a shower,  Mike would lift me up in his arms, and deposit me where I needed to be, and do everything in reverse when I was done. He would stand watch while I was in the tub, under the guise of making small talk so I wouldn't drown because I couldn't be trusted to stay upright. At this point I was 110 pounds and still losing weight. When we needed a car, the people behind the counter always asked Mike about me. At the time, it really didn't register why I was getting the attention. I wasn't in a lot of pain, just so unbelievably tired, I just didn't really pay attention to my surroundings. I had a velcro kitty that would only leave my side to use the litterbox and eat and than he was right back on the bed, snuggled into my side while I was sitting up, and into my tummy when I was sleeping, and that was really the only thing that registered, and that only some of the time. Mike was in charge of shopping, cooking, cleaning and my "social calendar" as well as keeping my work informed of tests being done and my status of coming back to work, while holding down a fulltime job.

During this time Mike  had an accident, and we lost the car, and he miraculously walked away with bruises only. It wasn't his fault, and several people witnessing the accident had testified to it, but the kid that ran the red light, was the son of the policechief, so since Mike hit him........... it was his fault. Our car was totalled, but luckily we still had his motorcycle to get to and from work, but for my doctors visits we had to rent a car, because there was no way I could hang on, or even get on the back of the bike. 

August 1st Mike was let go. We don't know if it was due to him taking off several times during lunch and working extra on Saturday and Sunday to make up the time if he was gone longer than half hour or what, but they were pretty obnoxious about it. Since we both missed Iowa he started jobhunting there, as well as in and around Sherman, Texas and on August 11th he had an interview in Hiawatha, Iowa. He would drive up on Monday, have the interview on Tuesday and drive back the same day as far as he could manage.  He came home Tuesday night around 1 in the morning, because he had gotten a call from the doctors office while on his way to Iowa, saying the results were in. He explained that he was on his way to Iowa for a jobinterview, and asked if he needed to reschedule, but was told there was no need, so he made the appointment for wednesday at 11.30 and kept driving.

We got our answer almost as soon as we got into the room. Non-Hodgkins Lymphoma, stage 3C, possibly stage 4. It rocked our world. I don't know why, but of all the possibilities, that one had not entered my mind. Chrohns disease was the worst I could get my head around. I don't know if Mike had considered it or not, but life for me, became a blur from than to about 2013, with snippits of memories.

I was to report to the hospital at 1PM, so the doctor would have time to get there, as she had a couple of patients still to see, so we had about an hour to get our barings. We only made it up to a parking lot half a blok from the doctors office before we broke down. We were completely at a loss on how to handle this little kink in the road. In a way, it was a relief to have an answer, on the other hand it was such a devastating verdict, it was hard to get our head around on what the future would/could look like.

At one I was checked in to a room and told to sit tight. As if I really had a choice :-) The doc came in, after taking blood, temperature and checking my eyes, and kinda went thru what was to come. That Thursday I was to have a couple of tests. One would be a bodyscan to see exactly how far the cancer had gone, the other would be a bonemarrow biopsy to see if it would stay a Stage 3 C or whether it would turn into Stage 4, at wich point she would have to adjust her current course of action. We should have the results on Friday, and the chemo would start shortly after, as soon as they could mix it up. Apparently it was personalized just for little ole me..... 

Mike stayed with me, but had to leave at 11.30, because at that time the hospital would be locked, except for the ER, but he could be (and was) back at 6AM. He brought sandwiches with Salami to keep me company for breakfast, and we ended up swapping, because whatever breakfast was, I couldn't stomach it. This set a trend, and from than on, Mike would eat my meals, and he would supply me with Salami sandwiches, every time I had to be in the hospital during mealtime.

At 10AM the doctor came in with a covered tray of utensils and whatnots to do the bonemarrow biopsy. I don't remember being scared, or actually having any feelings on the subject matter, but after rolling me over on my side and numbing my lower back and hip area, she told me to hold on to Mike and to not move. My anxiety started when I saw the look on Mikes face when he caught sight of the needle, but holding on to him was all I needed to stay still. Until I heard (and felt) the scraping on my bones. She must have noticed a difference in my attitude, because she asked me: Does it hurt? To which I answered "no", followed by her "Are you lying to me? Resulting in a giggle and "yes" from me. It wasn't until a couple of years ago on one of Mike's hospital stays that I got clued in on the size of that needle, and WOW! Was I glad I didn't know at the time what size it was, even though it didn't hurt during or even much after the procedure, it would have put my teeth on edge, I'm sure..   .  On friday the results were in, and it stayed C3, but my bonemarrow was clear, so my special Chemo cocktail was ordered and would be put to use late afternoon.  It didn't get there until 9 o'clock or there about, so we "enjoyed" another meal in the hospital. Well, Mike did, I had my Salami sandwich ;-) 

When the chemo finally arrived, I got a totally different excercize in pain. For starters, the nurse couldn't find a good vain to put the IV in, so she kept digging.... complaining like I did it on purpose, instead of calling someone else, but it got a lot worse when the chemo was administered. I guess she was on a schedule and having to dig for a good vain put her behind, and instead of a gentle, consistent flow, she pushed the whole thing into the IV as if it was a vaccine. There were 5 different ones. The first couple were uncomfortable closing in on painful and cold, but doable. The last one was agony. It burned like hellfire through my vain from my elbow to my fingertips. Mike looked ready to take her out, and to be honest, if I would have had the strenght I might have done it for him. I had told her it hurt, and she looked at me like "DUH! It's Chemo" so Mike went and got another nurse and told her what was happening, and she stopped the procedings and started reeming the nurse in front of us, that the "red devil" was to be administered at a drip rate, not a push rate, so as to avoid damage to the arteries!  Good to know, right?  One nurse left, the other took over, but the damage was done. My artery was showing almost black thru my skin and hurt like a very deep bruise, and over the next couple of days, it turned hard and painful. 

They kept me overnight, with Mike next to me, in an easy chair brought in, so he could rest and the weirdest thing started happening.... I got hungry!  Mike kept getting up and getting yoghurt, icecreampops, chips, chocolate, a muffing and pretty much anything edible from the nurses station.... That morning, the nurse updating my chart was almost giddy when he put "Pauli eats like a termite" on it. I thought it was funny as well, thinking it was because of the frequency, but it wasn't until about 5 years ago, that it registered that it was the amount of what I ate that night. (Yeah, sometimes I'm not really quick on the uptake! ROFL!!) My check up with the oncologist was on Tuesday, and I WALKED from the parkinglot across the street into the office..... Mike told her what had happened during Chemo and Doc checked the artery, shook her head but didn't say anything, just told Mike to make sure they wouldn't use that vain again, for anything. Now we were also clued in to the schedule.... Chemo every 2 weeks 2 times 6 sessions, with a sugartest second to last session and complete body scan 2 weeks after the last chemo. Starting immediately after the last Chemo, every 3 weeks a check up for 6 months followed by 1 year every 3 months, 3 years every 6 months and 5 years every year..... But first, it was decided that for the duration of the treatments, I was to have a "life port" so the episde with the chemo shouldn't be repeated, so.... another surgery was scheduled for that Friday to give it time to heal before the next Chemo the following Friday.

That Wednesday, Mike received the result from his jobinterview. He got the job, meaning we had 4 weeks to get to Iowa, get a place to live and settled in, get his truck running (still in storage in Marshalltown) so he could go to work, set up another oncologist, pick up my medical records and related materials, get scheduled for the next Chemo in Iowa, within 3 days of landing so we could keep the schedule, load up and travel.  Yeah, no pressure. The only upside on losing the Neon, was that we didn't have another vehicle to either tow or drive and our whole little family of 3 would ride in the movingtruck. Because of the lack of time to get things organized, we contracted a couple of college kids to load the truck. I tried to help, but was gently told to just keep them in coffee and enjoy the sun. They even put a chair out on the patio for me.  Don't know if Mike told them to not let me do anything, or if it was my appearance that made them protective, but it was kinda sweet, they checked in with me to see if I was OK, just as often as Mike was....

We planned the move for the week after my Chemo in Texas, and a week before the next in Iowa, to give me time to come off the high the Chemo gave me before traveling. It would take about 3 days before I would be able to sleep and sit still. Those first couple of days after Chemo, it felt like I had critters moving through my bloodstream like you see described as withdrawel on drugs or alcohol.... Not a good feeling, but for a good cause, meaning to stay alive. 

We had found an apartment about a block from Mikes new job, so he could ride his motorcycle thru his training, while he got his truck running. It turned out, his old 66 would not be right for what he needed (all he was asked during the interview was whether he had a truck) and he ended up shopping for a panelvan to store the supplies he was required to carry...... During this time, I had already lost parts of my hair, and I had chopped most of the length off what was left, so I was wearing specially for cancer patients designed headgear and the kid selling Mike the Chevy-van asked me at one point, after we got to talking about Pella, being Dutch and some other stuff, whether that was my "Dutch hat" and without even blinking I told him "no, that's my cancer hat"...... It didn't really bother me, and we still laughed about it 10 years later, but I felt SO bad for him. He turned seven different shades of red and apologized for about 10 minutes and when we went to pick up the van, he gave me a really nice bunch of flowers and another apology..... 

From Texas, we had found our next physician. Doctor Deborah Mason, or Doctor Deb, as she introduced herself. She and the rest of the staff, no exceptions were a godsent.... She understood my fears, my aversion to being me at that moment in time, the pressure on Mike to keep it together, because I couldn't, his need to work after the initial visit even if he wanted to be there with me (she turned us on to the group of volunteers that would drive me to and from Chemo when he was working) and guided us thru the process, answering questions, explaining things and actively helping to find solutions when we got to the point that we couldn't pay the bills anymore because of the high deductible.

The procedure for Chemo in Iowa was different from Texas. It was at a clinic sitting in a comfy chair, not in a hospital bed in the dead of night (even though we had an appointment, the treatments would be scheduled for about 8PM, but the chemicals wouldn't get mixed until I had checked in and was settled and took a long time to be available, so we ended up going home around 3 in the morning) There was a blooddraw (determining whether the chemo would take place), and always a check-up including weight check and a conversation with the doc before the Chemo and ice-pops right before the harshest additive was injected, to lessen the blistering in my mouth and water during the proces that took about 4 to 6 hours of steady, painless drips. I'll never forget the look on the nurses face when she told me on the second visit what my weight was, and I turned to Mike with the biggest smile, stating I gained 2 pounds!  (Sadly it took a while to stop that trend, but at the time, it was a really good thing to hear)

I had started forgetting little things around the 2nd Chemo, but with everything going on, figured I was just tired and sidetracked, than it got progressively worse by the time we got to Iowa and to our meet and greet with the new Doc. So much so, that I asked Mike if we should make an appointment with an Alzheimer specialist. I would ask him what he was fixing for dinner, get an answer, nod and ask again, because I didn't remember getting the answer.... It was scary. I really felt like I was losing my mind while on my quest to stay alive, and severely doubted if it was worth it, if I was going to lose my mind anyway. My biggest fear in life was to not recognize Mike and how much I loved him, so Mike asked for a referral at the visit, and the doctor almost fell off her chair.  She grabbed both our hands and very urgently told us that this was a normal side effect of the Chemo, but that it hit me harder and faster, because of my weakened state and the strenght of the chemicals.... There was nothing to worry about, and it would right itself once the chemicals were out of my system. I just needed to be aware and not make any big decisions, write any thoughts I had down, so Mike was aware of what was going on when he was not with me and to take a breath, as this was not what I should be worrying about. Like I said, she was great!!