3 years on the roller coaster and I'm getting loopy

Today marks 3 years since I was told and then had to walk into my husband's hospital room and tell him that he has cancer. What a day that was. The pain was unbearable. During Tim's hospital stay and when he was first diagnosed, I "powered up" and was strong whenever I was around him or Olivia but absolutely lost my mind when I was alone. I thought I would never stop crying. I found out, I think, 2 days before we got the news that they were ruling out, or in,
cancer with the bone marrow biopsy. I dropped Olivia off at school the next morning and headed to the ICU ward of the hospital.
As soon as she was out of the car, I broke down. I looked at the sky and tearfully yelled out loud
to God, "DON'T YOU DO THIS TO HER. PLEASE!!!!" I begged with every ounce of energy I had to spare her and my husband this awful fate. Obviously, it was not to be. I had told(OK warned to within an inch of their lives) all the doctors that were working on Tim's case, which included his primary care doctors, infectious disease specialists, hematologists, an ear, nose and throat specialist, and an "intensivist" that I never met, that they had better not walk into my husband's hospital room with bad news if I was not there. I've had that done to me and it is so not
cool. So unfortunately, the day I brought Olivia to visit Tim in the hospital was the day we got the news. It was crazy. Tim called my cell when I was in the car with Liv on the way to the hospital after picking her up from school. He told me the hematologist came in and wanted to
know when I was coming back. I knew we were in trouble right there. I held it together and got
to the hospital. Now I had to hand our kid off to my in-laws and they had to take her to the waiting room to get her out of there. I had the doctor paged, waited an agonizing 20 minutes, and she walked me way down the hall. With every step she took further from his room, I knew we
were in big trouble. I walked back to Tim's room and tried to keep my voice from cracking and broke the news. He knew it. I had warned him that they were looking for this so he was not blindsided and in case the doctors did not do as I said and told him when I was not there and he had thought back over symptoms he'd had for the last year, in addition to what he does for a living, and he just knew. Then a neighbor, who we really don't even like, stopped in to see Tim
in the hospital just minutes after I told him. He walked into Tim's room after I briefed him at the
door and said something like, "Well this is a fine mess you've gotten yourself into." Good grief.
Just writing all this makes me wish I had a delete button on my brain. There are so many horrible memories I have of things and I wish I could just banish them all. The months that followed this were something no one that is not experiencing something similar could imagine.
I mourned for months. What I mourned was our life as we knew it which was over. No holiday,
vacation, or experience is ever the same when you wonder if there will be another with your family intact. Any feelings of being blessed or fortunate flew right out the window. I was pissed,
disappointed, and reeling with grief over what had happened to us. I could barely look at Olivia and Tim together without losing it. I have had some real trouble in my life. It had been no picnic but had just started getting back to normal in many ways and then Wham. Just when I thought things were going pretty good, cancer comes to our house.
2 weeks later there was another hospitalization where all the doctors missed the cause of Tim's fever and pain and I diagnosed Tim myself with a dangerous absess in his sinuses caused by the prior hospitalization. I had to tell a doctor I would not take him home till they looked into what I suspected and she ran a cat scan cause what I said made sense and I was right. Sounds like a pat on the back doesn't it? What it is is one of the scariest parts of this journey. Despite being treated in one of the top 50 hospitals in the country, one of the top transplant centers in the world and by a very well known MM specialist who has done this for 20+ years, we found out just how much we had to research and stay on top of things because mistakes happen even more than we already knew. It was scary to learn that we are more responsible for how Tim does than we could have possible imagined. I DO NOT want this kind of responsibility but I have it anyway. I have caught several mistakes and oversights and it's nothing other than the fact that this doctor and his staff were overworked and could not possibly stay on top of everything with their patient load. The real beauty was Tim's transplant. It wasn't enough that we had to deal with the utter devastation of it not working at all, but then for some reason Tim's good blood counts were not recovering even well after he was discharged. We were petrified.
The doctor had no idea why. Tim needed neupogen several times, Aranesp once. Then about 5 months after his transplant, I found out from another caregiver what happened. The hospital changed their stem cell freezing process and it took them months of transplant patients not engrafting normally or at all before they figured out the process was failing. There is a big cover-up now.
We should be suing them because Tim went through a lot to collect his cells and the 8 million that are on ice there are useless and he has none he can use for later. I'm not sure it's wise to sue a hospital you need care from but again, I'm pissed. This blog covers a lot of what has happened since that time. We have had a long break now from treatment since our daughter's 10th birthday which was May 9, 2008. We thank God and are very grateful but know that this is
the calm before another storm. Emotionally, we are doing well. You have no choice, well I guess you do, but basically we have accepted that this is the cards we were dealt. We can't change it now and I know that you DO NOT mourn someone who is still here. You live, laugh, and love and cry when no one is looking. The three of us stay strong for each other. I have seen a courage and selflessness in my husband that amazes me every day. We still have our ups and downs. Me mostly I suspect. But I feel that if my husband can have the kind of strength he has shown, it would not be fair for me to bring him down with my Eeyore
attitude. So I put a smile on my face and make the best of it. I get support from others and offer
it back on the internet as well as the people I meet through our doc's office and support group.
As bad as things are, I know it could be worse and I pray that God plans to keep him with us,
and that no more tragedy befalls our family to add to this already heavy burden. I have always been a learner but have learned even more during these last 3 years. I have met, both in person
and on the www, some pretty darn incredible and caring people who have enriched my life and teach me even more everyday. I have recovered enough from my own medical and anxiety issues to get back to church where I am meeting even more terrific folks. My family has come together to help Tim, Olivia and me so much and my husband has been shown some real love and support from many people which touches him deeply. Life is still a roller coaster but I have learned to just hang on tight when the twists and turns get too much and somehow it always seems to settle down again so I can get my bearings back. Having a child helps. Though it is also
what is so painful for Tim and me to deal with that our daughter got this raw deal, we also know
that she is the reason we have to try so hard to live as well as we can. We travel and make memories together. The three of us are tight as can be. Recently, I have seen that there are a lot of women struggling now on the MM blogs I read. Some are caregivers and some MM patients themselves. Some are pretty new to this MM deal. How lucky we all are to have each other. I don't know what I would do without the support of "knowing" you. But for those who are struggling, and I guess we all are, but maybe for those who are new at this, may I just say that you will be amazed at how strong you will become. I don't often reveal this but I spent half my life crippled by agoraphobia because it took literally decades of misdiagnosis to find the reason behind chronic
near-fainting spells(and sometimes fainting) that I had for most of my life. It pretty much ruined what should have been the best and most productive years of my life. After the diagnosis, I finally made headway in starting to get over the long held anxiety issue. Tim's diagnosis kicked that progress into overdrive. I had to be there for him as he had been there for me. We had swapped roles. I had not driven to the town where his doctor and hospital is in 20 years before this happened to us. I
drive there, alone even, all the time now. When put to the test, women can do most anything.
God made us that way for a reason. We are the glue that holds it all together in families so we need to be strong. I was an emotional wreck, anxious and scared all the time when I had the agoraphobia and no control over my health. I had lost all confidence in myself so if I can do this
caregiver thing now, anyone can. As someone on the acor myeloma listserv
says, "you put on your big girl pants and get on with it." And please don't think I am not aware that it is different for those who are the patient instead of the caregiver. It's vastly different,
I know. I just know that one can overcome so much and that fear is really the biggest hurdle
we all have. If you can somehow get the lid on that part of it at least somewhat, you can make
huge strides. So here I am 3 years later. The same girl only different and smarter but still
hanging in there. I have to LOOK for our blessings harder now but they're there. And when I'm really ticked, I realize there's strength and determination that comes from that. Have you ever seen "Fried Green Tomatoes?" Some days, ya gotta whip out your inner TAWANDA!!!